tag:blogger.com,1999:blog-68312488872894372812024-03-13T22:24:18.205-07:0042 StaplesAn account of one family's experience coping with a brain tumor."W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.comBlogger176125tag:blogger.com,1999:blog-6831248887289437281.post-81873413215943642832018-06-13T12:51:00.001-07:002018-06-13T12:51:22.870-07:00Thinking of Eric today...Today marks the fifth anniversary of Eric's passing. I've wept quite a bit today, as I often do when I think of the huge hole Eric left in our lives. If anyone still is subscribing to this blog, I just wanted to reach out and share a moment of connection with you, and to let you know that all of us Arons's are not only thinking of Eric, but also of all of the friends who rallied around him during his illness and made his life so rich and full of love and support. You are all amazing people, and our lives are fuller for having the opportunity to know you.<br />
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I miss Eric every day, and I find myself impacted by him on a near-daily basis. "What Would Eric Do?" has become a guiding principle for me, and although I have always found it easier to make decisions than he did (okay, let's be honest, <i>everyone </i>makes decisions better than Eric did!), I now frequently make decisions that are more courageous, generous, and embracing. A friend calls inviting me to meet her for a weekend in Chicago just for fun, in the middle of the semester - it's a crazy thing to do at the busiest time of the year, but I think "WWED?" and the answer is: yes, go, life is short, being with friends is what it's all about. A colleague tells me about this amazing 24-hour concert performance by Taylor Mac that she saw in New York last year, and mentions that it will come to Philadelphia this year, over two weekends, for 12 hours each weekend - it's expensive, involves two weekends of 11-hour round trip travel plus a marathon performance, but "WWED?": well, Eric would not forgo a once-in-a-lifetime opportunity because of silly things like money or travel time, and so I go, and it's amazing and fabulous. These are just two gifts of the "WWED?" philosophy from this past year, and though it pains me every day that Eric is not with us, I take consolation and even some joy in thinking that I carry his spirit forward, even if I can only emulate him in small ways.<br />
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May his spirit live on in all of you, too....<br />
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<br />"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com0tag:blogger.com,1999:blog-6831248887289437281.post-32745592744851963742013-08-19T10:14:00.002-07:002013-08-19T10:14:56.068-07:00So much love...The memorial on Aug. 4th was an amazing celebration and commemoration of Eric's life, and of the impact he had on so many. The day began with a hike up Mt. Tam with about 15-20 of Eric's friends and relatives -- a beautiful hike, one of Eric's favorites, we were told. Then we returned to the Tamalpais Community Center, where we were both amazed and humbled by the number of people who came to share in the remembrance of Eric's life. It was such a gift to us, as a family, to be able to meet and connect with the people who had been so important to Eric. We will cherish the stories and memories you shared. Thank you all for attending. And a very special thanks to Sheri, Laura, Alexa, Grace, and Adrian for all of your efforts and time in organizing the event -- you gave us all a priceless gift.<br />
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On Monday, Aug. 5th, Eric's colleagues at SRI dedicated a tree (just outside his office window) to his memory, and held a celebration in his honor. More great stories were shared, more tears were shed (I'm not sure I knew that tear ducts could produce such an endless volume of tears!), more chocolate consumed. Our thanks to all of Eric's colleagues, but especially to Rat, Bob, Jeff, Todd, and Shuri, for all their support of Eric, and for the lovely reception.<br />
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<br />"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com0tag:blogger.com,1999:blog-6831248887289437281.post-34322281354218941572013-07-12T13:10:00.002-07:002013-07-12T13:10:39.935-07:00Celebrate a life well lived!<span class="Apple-style-span" style="font-family: 'lucida console', sans-serif; font-size: 13px;"></span><br />
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Please join friends and family in sharing memories and love for Eric at a gathering that will begin at 2:00 p.m. on Aug. 4, 2013, in Mill Valley, CA.</div>
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<span id="yiv1612683159yui_3_7_2_36_1373646145297_76"><br style="color: #333333; font-family: Arial, Helvetica, sans-serif;" /><span style="color: #333333; font-family: Arial, Helvetica, sans-serif;">At 3:00 p.m. we'll hold an informal service to provide an opportunity for all to share stories, memories and thoughts.</span></span></div>
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In honor of Eric’s love of really great chocolate, which he usually shared during outings, please bring a chocolate bar.</div>
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<span style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 10pt;">Also, Eric spent many weekends hiking the beautiful trails of Marin. We hope you’ll join us for a couple of organized hikes in Tamalpais Valley from 11:00 – 1:00 p.m. Details to come.</span><br /><br /><div style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 10pt;">
If you’d like to add digital photos to our slide show, please send them to <a href="x-msg://388/" rel="nofollow">acotter@nonsensical.com</a> </div>
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<span class="Apple-style-span" style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 13px;">Note: If you'd like to come, please contact Laura Washburn, <a href="mailto:laurawashburn@sbcglobal.net">laurawashburn@sbcglobal.net</a>, to be added to the Evite. This helps us keep track of how many friends and family members are joining us that day.</span><span class="Apple-style-span" style="font-family: 'lucida console', sans-serif; font-size: 13px;"><div>
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Light refreshments will be served. </div>
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<span id="yiv1612683159yui_3_7_2_36_1373646145297_111" style="font-weight: bold;">Location</span></div>
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<span id="yiv1612683159yui_3_7_2_36_1373646145297_116"><span id="yiv1612683159yui_3_7_2_36_1373646145297_122" style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-weight: bold;">Tamalpais Valley Community Center</span></span></div>
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<span id="yiv1612683159yui_3_7_2_36_1373646145297_127"><span id="yiv1612683159yui_3_7_2_36_1373646145297_124" style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-weight: bold;">203 Marin Avenue</span></span></div>
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<span id="yiv1612683159yui_3_7_2_36_1373646145297_133"><span id="yiv1612683159yui_3_7_2_36_1373646145297_130" style="color: #333333; font-family: Arial, Helvetica, sans-serif; font-size: 13px; font-weight: bold;">Mill Valley, CA 94941</span></span></div>
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</span>"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com0tag:blogger.com,1999:blog-6831248887289437281.post-59294202739453179902013-06-24T09:01:00.000-07:002013-06-24T09:01:18.521-07:00SF Memorial--Save the DateA memorial celebration of Eric's life will be held on August 4, 2013 in San Francisco. Details of time and place will follow soon. Please hold the date and plan to join friends and family to commemorate Eric's life."W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com0tag:blogger.com,1999:blog-6831248887289437281.post-71893212484220090702013-06-19T21:10:00.003-07:002013-06-19T21:17:52.355-07:00Memories...<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Those of you who follow this blog may also have been facebook friends with Eric. If so, you will have seen the many posts on his timeline sharing memories of Eric's life and the ways he inspired others.</span><br />
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Friends of Eric's have set up a tumblr space outside of fb for those who knew Eric to post memories, pictures, videos, etc. If you haven't used tumblr it's very easy to use, just set up a username and they will email you to confirm, "follow" Eric's page, then you're good to post your memories and thoughts on the site. </span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /><span class="Apple-style-span" style="color: blue;"><a href="http://ericarons.tumblr.com/">http://ericarons.tumblr.com/</a></span></span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />Check out the links on the top of the tumblr page, there will be info updated about a planned memorial service for Eric in the Bay Area in August, and there is a list of charities Eric was involved with if you are moved to make a donation in his name. There are also instructions on how to send pictures for use in a slideshow at the memorial service.</span><br />
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br />Special thanks to Adrian for setting this up. Please pass this along and encourage others to participate~and if you posted to Eric's fb page, we would be grateful if you would re-post to the tumblr site so that we can collect these memories in one place.</span>"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com0tag:blogger.com,1999:blog-6831248887289437281.post-20689430904142186002013-06-13T13:20:00.001-07:002013-06-13T16:17:52.340-07:00I write with heavy heartEric passed away early this morning, peacefully, in his sleep, with family by his side.<br />
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He was, as I've written in the last few posts, ready to go, and his end was mercifully quick. For that, we are all thankful.<br />
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Eric wished to donate his remains to research and education, and we have honored those wishes, in hopes that the cancer researchers at UCSF will be able to glean information from the study of his tumor that might one day lead to the discovery of an effective treatment for future <i>glioblastoma multiforme</i> patients. Nothing would make Eric happier than to know that he could contribute to scientific progress even in death.<br />
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A funeral service will be held in Michigan on Tuesday June 18 at 2 pm at the <a href="http://www.thedorfmanchapel.com/homepage.php" target="_blank">Dorfman Chapel</a> in Farmington Hills; those wishing to attend should check the chapel website for details. Plans are also in the works for a memorial service in San Francisco later this summer.<br />
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To all of Eric's friends who have been following this blog and have shared your warm thoughts and wishes and support over the last four years: thank you for being there with him and with us. He was a lucky man to have such a loving community of friends.<br />
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<br />"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com11tag:blogger.com,1999:blog-6831248887289437281.post-52234751704976516202013-06-11T20:22:00.000-07:002013-06-11T20:23:34.650-07:00UpdateJust a quick update to let folks know how Eric is doing. Mom, brother Bil and I (big sis) arrived last night. Over the weekend, Eric was able to "virtually" participate with the rest of the family in Nicolas's coming of age ceremony and enjoy a nice dinner with friends. On Monday, he stopped taking steroids. When we arrived Monday night, we brought his favorite Michigan meal (a "make it larger" Olga sandwich) and a piece of homemade chocolate cake. He devoured these and we talked and hugged and he went to sleep. Today he has slept all day--rousing slightly to take some meds, but not eating or doing anything else. He seems very relaxed and peaceful and does not seem to be in any pain.big sishttp://www.blogger.com/profile/06008702662295369349noreply@blogger.com4tag:blogger.com,1999:blog-6831248887289437281.post-31471910289904145052013-06-06T20:51:00.001-07:002013-06-06T20:51:30.502-07:00Rage, rage, against the dying of the light...Several months ago I was reminded of Dylan Thomas's famous poem "Do not go gentle into that good night" when thinking about Eric's attitude toward the fast-approaching end to his own life. Eric wanted, in fact, to go as gentle as possible; he seemed, in the last few months, to have come to peaceful terms with the awful hand he'd been dealt, and worried more about how hard it would be for us to have to lose him than for him to go. "I'll be gone," he'd say, "I won't have to deal with it." I think we all were inspired by his brave reconciliation to the cessation of his life. He wasn't interested in fighting death for every last second of life, as Thomas urges his dying father to do in his poem; he wanted quality of life or none at all, and hoped, above all, not to live for a prolonged period with the terrible disabilities that the tumor might produce.<br />
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The disease doesn't pay much mind to it's victims' wishes, unfortunately; and Eric is now in a place he never wanted to be. His functioning has deteriorated greatly over the last couple of weeks. He has to exert enormous effort to stand up -- his right side is completely numb, and doesn't seem to obey his mind's commands; when I observed to him that it looked as if his limbs felt like they were encased in a suit of armor made of lead he said that this was exactly how it felt to try to move. Walking is precarious and slow, and he uses a wheelchair if he needs to go more than about ten feet. He is often disoriented and has enormous difficulty finding the words he needs to communicate his thoughts, feelings, and needs. The steroids he is taking to lessen the inflammation in his brain give him a ravenous appetite, and he eats an astonishing amount at each meal -- which also means he has put on quite a bit of weight. <i>He</i> may not be interested heeding Thomas's command to "burn and rave at close of day," but the steroids in his body make him perversely hungry for sustenance. They also make him emotionally volatile and quick to anger and frustration, although when friends come to visit he perks up and reverts to his old charming, witty, sly self. His sense of humor is as sharp as ever, and when he's rested he can pull some amazing facts and stories out of his memory.<br />
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He is in need, at this point, of company 24/7, to keep him safe and to help him take care of his daily needs. He is still able to do many things on his own, but everything that we all take for granted takes him enormous effort and energy. He spends a good deal of the day sleeping -- we joked when I was just there that he's on a dog's schedule: that is, a day full of power naps punctuated by meals, pee breaks, and "play time" with friends.<br />
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It became pretty clear over the last week that the trip to Michigan was not going to be possible in the condition he's currently in, so we will be skyping with him over the weekend so that he can participate virtually in his nephew's coming-of-age ceremony. After the weekend, family will return to SF to be with him. We know we are seeing the dying of the light now, and we'll be at his side, giving what comfort and support we can to help him go as gently as he hoped he would.<br />
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<br />"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com11tag:blogger.com,1999:blog-6831248887289437281.post-24714633482751126222013-05-08T12:30:00.000-07:002013-05-08T16:03:14.213-07:00Update<!--[if gte mso 9]><xml>
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<br />
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If you were to see Eric sitting in a room, or walking down
the street, you’d have no idea he has a fatal disease.<span style="mso-spacerun: yes;"> </span>At first glance, he seems like the healthy,
hale Eric we’ve all always known.<span style="mso-spacerun: yes;"> </span>That’s
what is making this current phase of the disease so frustrating and baffling.<span style="mso-spacerun: yes;"> </span>He doesn’t look like someone who is battling malignant cancer by any stretch of the imagination. But when you spend time with him it becomes clear that his
abilities have deteriorated greatly and begun to impact his quality of life.<span style="mso-spacerun: yes;">
</span>In addition, his blood test on Monday revealed a continued low platelet
count which, combined with recent symptoms, rules out another treatment with
CCNU as a viable option.<span style="mso-spacerun: yes;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And so, today
Eric made the decision to admit himself into hospice care.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This doesn’t mean that he’s about to enter into a phase
where he’s confined to bed on a morphine drip or anything.<span style="mso-spacerun: yes;"> </span>At this point, Eric is still able to eat and
clothe himself, still able to be out and about (we’re going to the theater on
Thursday and the movies on Friday), still able to meet with friends, etc.<span style="mso-spacerun: yes;"> </span>But a lot of activities are getting more
challenging, and he’s begun to experience a worsening of some symptoms, and the
onset of some new ones, all seemingly tumor related.<span style="mso-spacerun: yes;"> </span>Communicating can be difficult for Eric, both
verbally and – more frustrating, it seems – via text and email.<span style="mso-spacerun: yes;"> </span>I’ve watched him spend 15 minutes composing a
two sentence email to a friend.<span style="mso-spacerun: yes;"> </span>He has
no feeling or vision on the right side, and is constantly bumping into door
jambs and other obstacles on the right that he can’t perceive.<span style="mso-spacerun: yes;"> </span>He knocks things over accidentally with his
right hand because he has no idea what is there for his hand to encounter.<span style="mso-spacerun: yes;"> </span>He’s also experiencing poor depth perception,
which means that simple activities like eating take more time and energy, because
he can’t always locate in space what he wants to pick up.<span style="mso-spacerun: yes;"> </span>He’s experiencing episodes of what he calls
“chills,” and this morning he woke up with a debilitating headache on the left
side.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What hospice does mean is that he is waiving further
treatment. No more MRIs.<span style="mso-spacerun: yes;"> </span>No more blood
tests. <span style="mso-spacerun: yes;"> </span>No more chemo, or trials,
etc.<span style="mso-spacerun: yes;"> </span>He is, as he puts it, “done.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That’s a hard sentence to write, as you imagine, and I’m
writing this post through tears.<span style="mso-spacerun: yes;"> </span>As a
family we are so proud and admiring of the courage and integrity and strength
that Eric has demonstrated over the last 4 years.<span style="mso-spacerun: yes;"> </span>He has beaten every odd, and has managed to
remain incredibly healthy through four surgeries, four different chemotherapy
regimens, and countless disappointments and setbacks.<span style="mso-spacerun: yes;"> </span>(We are told that he is now a “verb” at the
UCSF Tumor Board, and has helped the physicians determine a new method of
administering one of the forms of chemotherapy).<span style="mso-spacerun: yes;"> </span>He has always been clear that he does not
want to fight simply for the sake of fighting, and we are a hundred percent
supportive of his wishes.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Some of you, on reading this, will want to reach out to
Eric, to see him, email, talk, text, etc.<span style="mso-spacerun: yes;">
</span>He welcomes getting together with friends, and hearing from friends, but
please be understanding, if you do contact Eric, that it’s very hard for him to
read & respond to emails and texts; he now relies on Siri to read his email
& text messages and type his responses (thank you, SRI!) but she sometimes
doesn’t translate exactly what he says.<span style="mso-spacerun: yes;">
</span>So communicating is a slow process for him, and the more brief and clear
you can be in your communication, the easier it is for him.<o:p></o:p><br />
<br />
<span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: 16px;">I am here in SF until Saturday May 11</span><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: 16px;"><sup>th</sup></span><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: 16px;">; my sister and mother will be in town next week; my brother shortly after.</span><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: 16px;"><span style="mso-spacerun: yes;"> </span></span><span class="Apple-style-span" style="font-family: 'Times New Roman'; font-size: 16px;">We’re here mainly to support Eric, and we will gladly step out of the way if a friend wants to take him out for lunch, tea, a walk, etc., so please do not hesitate on our account to make plans to see Eric.</span></div>
<div class="MsoNormal">
<br /></div>
<span class="Apple-style-span" style="font-family: 'Times New Roman';"><br /></span>"W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com6tag:blogger.com,1999:blog-6831248887289437281.post-24763939617256403262013-04-10T11:10:00.001-07:002013-04-10T11:10:40.838-07:00Wish I had good news to share..."W" here, Eric's sister. Eric is finding it harder and harder to write, so I offered to post the occasional update.<br />
<br />
Eric's been experiencing numbness in his right arm and leg, and has also lost more peripheral vision in his right eye. For a while we had hope that perhaps these were aftereffects from his car accident a couple of weeks ago, but yesterday he saw his doctor, who confirmed that these symptoms are being caused by the tumor. Eric's also having trouble with word recall, and he says that being in conversation with large groups of people is getting increasingly difficult -- he finds it hard to follow the thread.<br />
<br />
It's hard to see my bright, sharp, quick younger brother struggle to express himself and understand what's going on in conversation. His language abilities seem to come and go: one on one he can be almost perfectly fine, fluent and clear, but when he's tired or stressed or there is too much sensory input he seems to get easily confused and unable to grab the words he needs. He expressed to me on the phone today how difficult it is for him to experience this shrinking of his abilities; so much of his joy in life comes from being with his friends and family, and it's becoming harder and harder for him to participate in conversations and enjoy that company. Much of what he loves to do physically is also looking out of reach -- the numbness in his arm and leg keeps him from being able to rock climb or kayak, and the loss of vision makes biking and even hiking a challenge.<br />
<br />
He'll be having another MRI next week, I think, and he doesn't think they'll continue him on the CCNU, given the symptoms he's experiencing. But we'll see. A clinical trial is out of the question at this point for him; he's always been clear that quality of life is his most important priority, and he isn't willing to spend what time he has left suffering the side effects of a treatment under test. <br />
<br />
Eric has bravely, admirably reconciled himself to the fact that he is in the end stages of this battle. I don't know how he became so strong and courageous; he's far stronger than the rest of us, who are still wrapping our minds around the reality of the fact that this terrible disease is going to take him from us. <br />
<br />
If you are one of his friends in SF, I urge you to find a time to stop by and visit him. Best not to try to see him in large groups.<br />
<br />
These posts are going to be hard to write. I'll try to keep you updated. "W"http://www.blogger.com/profile/03661389410052233010noreply@blogger.com14tag:blogger.com,1999:blog-6831248887289437281.post-79490162892109935312013-01-29T16:42:00.002-08:002013-01-29T16:42:48.123-08:00When "bad" means "good"?As you recall, the initial result from CCNU showed tumor growth. We decided to continue with a higher dose, but really, my expectation was pretty minimal. In fact, the expectation was SO low that today, when I was told about how my tumor had grown slightly (smaller than the last time it grew), I was thrilled! Yes it grew bigger, but less so than the last time?!? Party time!<br />
<br />
At this point, because this tumor cannot be stopped entirely, I'm definitely enjoying one day at a time. In fact, assuming I still qualify for the next cycle, we might try to hit the chemo a little more intensely.<br />
<br />
Apology to those who have recently called or checked in. I will touch base soon. However, I just celebrated the event by eating a big cookie, and now it's time to sleep....Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com5tag:blogger.com,1999:blog-6831248887289437281.post-14858474534805714212012-12-19T22:35:00.002-08:002012-12-19T22:35:49.313-08:00It really never gets easyThe 6 week hiatus is over. Part of me had a little bit of hope that maybe, for this one brief moment of time, I'd get to celebrate some success. Unfortunately, the latest reality, well, sucks. Yes, the part that seemed to be growing had been held at bay. But a new location, more difficult to reach, is now rearing its ugly "head". At this point we are mainly looking to try to stretch the time as much as possible without expectations. I guess that was always the goal.Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com5tag:blogger.com,1999:blog-6831248887289437281.post-3820838597931321882012-11-16T15:55:00.000-08:002012-11-16T15:55:05.316-08:00Was the timing the same?Today is Day 5. If you'll recall from Temodar, Day 5 was one of the worse days for energy. And for CCNU so far? Yep, today was not so great. I woke up with the slightly spiny head, but somehow thought that if I made it to work, I could push through the day back to normal. About halfway done to work on the train, I was told otherwise. So I headed back up and rested out the remainder of the day. I'm really hoping that the worst day is behind me, since the weekend is starting tonight!<br />
<br />
Note: This is not actually a final conclusion as to whether or how CCNU might influence my energy. One scientific experiment does not prove a result! In fact, one other theory I have, and hope it ends up disproven, is that the spinning feelings are directly related to increased tumors spreading near my acoustic neurons. And yeah, let's not think about that....Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-75318375722266983042012-11-12T08:38:00.000-08:002012-11-12T08:38:04.351-08:00Here we goLast night, for the first time, I took the CCNU. Given absolutely no prior experience, I have no idea what to expect. So far it's been pretty ok. More to come....Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-27377945526390973472012-11-06T16:45:00.002-08:002012-11-06T16:48:34.669-08:00I swear I used to be able to spell!<div class="separator" style="clear: both; text-align: left;">
</div>
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And here's the proof! My prize from winning the contest in elementary school.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-iCHQXLyMhzk/UJmpfz8OXiI/AAAAAAAAEWE/bOKpAY8Tesw/s1600/Spelling3.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="http://3.bp.blogspot.com/-iCHQXLyMhzk/UJmpfz8OXiI/AAAAAAAAEWE/bOKpAY8Tesw/s200/Spelling3.JPG" width="150" /></a><a href="http://4.bp.blogspot.com/-ZzhhJFeMKDM/UJmpcMAL0oI/AAAAAAAAEV0/b2Jv-P7cr2Q/s1600/Spelling1.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="http://4.bp.blogspot.com/-ZzhhJFeMKDM/UJmpcMAL0oI/AAAAAAAAEV0/b2Jv-P7cr2Q/s200/Spelling1.JPG" width="150" /></a><a href="http://2.bp.blogspot.com/-eE1sfO3yzDw/UJmpeDiwF_I/AAAAAAAAEV8/eObY0KAXrto/s1600/Spelling2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200" src="http://2.bp.blogspot.com/-eE1sfO3yzDw/UJmpeDiwF_I/AAAAAAAAEV8/eObY0KAXrto/s200/Spelling2.JPG" width="150" /></a></div>
<br />
In fact, I came in 6th place in this event. Only missed one specific
word that, when initially presented during practice, had been read with a
mid-western "accent". Thus it was unrecognized during the actual
competition.<br />
<br />
Now I rely on the trusty Google for correcting my typing, though I must say, occasionally it has its flats.... <br />
<br />
<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-62989684296942795852012-10-31T16:05:00.002-07:002012-10-31T16:05:20.907-07:00Current Status...and AdviceI'll admit, my recent optimistic posts were always filtered through rose colored glasses. This time, it's no longer possible. Some of those "possible" tumors have actually continued to grow. The other areas have become stable, but in general the cancer has spread, albeit slowly, into lots of different locations. Some growth has even shown itself on the right side of the brain. There aren't a lot of choices for treatment. From what I can tell right now, the options are simple: stay with Temodar, but shift to a more consistent schedule where I take it every day for 6 weeks at a lower dosage, or; switch to CCNU with the hope that the areas still growing through the Temodar become hammered by the old school chemo. Of course, the best stuff is not held until the end. The best stuff is offered first. So you see, these choices are not particularly enticing in general. This makes it difficult to get excited. There is, of course, some hope. But more to the point, and more towards reality, I am hoping to enjoy whatever it is I have remaining. Taking a drug that will make my life miserable does not fit the bill. Especially since there is so little evidence in this case for misery to lead to a long life.<br />
<br />
That said, it is still not entirely clear which of my options will reduce the misery and allow the most enjoyment I have left, whatever that may be. They each have there negative side-effects, and from what I've read, the risks move all over the place. So there, dear readers, is the moment I could certainly use some advice. You have the two options available. I'll be curious to hear your opinions.Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com8tag:blogger.com,1999:blog-6831248887289437281.post-37727878017001851542012-10-13T08:50:00.001-07:002012-10-13T08:50:23.342-07:00Rough Chemo Week<div class="separator" style="clear: both; text-align: center;">
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<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-48644398995591837732012-10-02T18:53:00.001-07:002012-10-02T18:53:02.658-07:00Do a few bad events indicate a trend?Eh, not really. To calm those concerned, basically my MRI report today was pretty good. I have to add the caveat that lately it doesn't take much to earn that rating, compared to the older days.<br />
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But first, the beginning. I headed out to my MRI location early, with the hope that they would pull me in a little early, thus guaranteeing that I'd be outta there in time to meet my appointment. Eventually, <b>after</b> my actual scheduled appointment, I was ushered in.<br />
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As usual, I needed to sacrifice a vein for them to pump in contrast during the MRI, but this time, the location chosen struck a nerve in me, literally! My entire body was shaken and electrified and yes, it hurt like $@!#%^@! The first finger of my left hand remained numb, and there's actual still a little wart like bump where it's most numb.<br />
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After the MRI, while headed to my appointment, I get a call from Aetna. They are now in charge of getting my medications to me (as in, they will send them to me, so I am NOT supposed to get them from a pharmacy). They ask me where I had my "extra" order for the anti-nausea sent last month. I tell them I did not place an extra order. They ask my where did I have it sent. I tell them I did not have that happen. They ask me where did I have it sent. Do you recognize a pattern? At that point, I pretty much lost it and told them that this is <b>NOT</b> my issue, and the whole reason they exist is to deal with these kinds of things themselves. They should know this, and if they do not, they should contact my doctors (for whom they have the contact information). They should <b>NEVER</b> bug a patient, especially when they are headed to a doctor's appointment to receive the news as to whether he's doing well or in serious trouble. Ironically it seems the whole "mistake" was their own fault. I got this from a message, but I will be checking in further tomorrow....<br />
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Once I got to UCSF, I was told that my regular oncologist's wife is having her baby, today! So that's great news for them, but it also meant that I'm getting a sub as my doc. The docs there are all great, so I wasn't too concerned beyond the fact that in general you get used to and begin to appreciate one person's approach, and taking on a change from that when you're dealing with some serious issues adds complexity. Needless to say, even after some gaps in communications and understanding, all came out well in the end. The information is basically moving in the right direction. The decisions for what to do at this point had already been made by my regular doc, and I trust it relative to the overall concerns I had in my conversation with the sub.<br />
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Where does this stand now? Well, I start my next Temodar this Thursday evening, then I get another hit of Avastin on Friday. Likely another sore throat (and hopefully nothing more than that) this weekend. Exaustion next week. And finally recovery next Thursday or Friday. And who says I don't make plans?Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-9230075111522231502012-09-15T00:06:00.004-07:002012-09-15T00:07:57.743-07:00Let's do the numbers<div class="separator" style="clear: both; text-align: center;">
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<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com3tag:blogger.com,1999:blog-6831248887289437281.post-57139917208706598812012-09-11T18:44:00.001-07:002012-09-11T18:44:55.760-07:00I'm saving this...for you!Yes, <i>you</i>. <i>You</i> who have mentioned how good I look with my current hair color. <i>You</i> who are impressed that I was able to "pull this off", for free! <i>You</i> who think there must be some way to "milk" it. I'm saving it for <i>you</i>, dear viewers, both past and (briefly) future, so it will never disappear. In the digital sense. For <i>you</i> know that once I cut enough of my hair, it will never be coming back like this again.<br />
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<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com2tag:blogger.com,1999:blog-6831248887289437281.post-62134032683547712732012-09-05T19:06:00.000-07:002012-09-06T14:42:00.423-07:00It could be better......but it could be worse! Today was the "two month" appointment to see how things have been going, or...er...how things went. And when given a "two month" hiatus, one often becomes hopeful for reaching a temporarily stable path. As it turned out, one of the "blobs" showing in the MRI from May went for a repeat performance. About the same location, about the same intensity (or a little less). My initial reaction was, obviously, not thrilled. But after discussing it further with Dr. B and thinking about our initial attack on those tumors, I actually felt pretty ok. Here's the explanation:<br />
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For my initial treatment using Avastin, Dr. B took the approach to deliver it only once, and then watch and see what happens. The logic for this approach, to which I strongly agree, is that you don't want to load the system with a drug that the enemy will eventually learn how to defeat. It's similar to using far too many antibiotics to treat other diseases. When humans tend to take them when they aren't needed, they unintentionally create a "Super Bio", no longer able to kill with the original weapon. Dr. B did mention long ago that there was a chance it might recur, but if that were to happen, we could hit it again with more Avastin. In fact, back in May he specifically mentioned that "It wouldn't be very surprising for at some point in the future...4, 6, 8 months...to have some measure of rebound...." And we are currently at? Yes - 4 months. This led me to thinking, what if I could simply take the Temodar every month and add an injection of Avastin every 4 months, and all my cancer would stay dormant? That would not be a bad way to survive.<br />
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So at this point, I will get another hit of the Avastin this Friday. I will likely stick with the Temodar approach for another cycle, unless the Tumor Board has a very strong opinion otherwise. As for the rest, no other previously exposed tumors showed up again in the latest MRI, and <b>that</b> makes for some good news.<br />
<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com6tag:blogger.com,1999:blog-6831248887289437281.post-1772683531269408522012-07-16T21:53:00.000-07:002012-07-16T21:53:11.883-07:00Color me sillyWhen we last saw Logan, he was showing a "bleaching" pattern taking over his whole body. Maturity? Stress? Well, fellow Avengers, this pattern was <a href="http://42staples.blogspot.com/2012/05/when-will-things-turn-around.html">caused by</a> the evil and lazy cancer drug villain.<br />
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But wait! Could it be?!? Is this our same hero Logan, fighting off the evil Doctor Bleachmeister?<br />
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Hurray! Hurray! But wait....has he really finished off the Bleachmeister? Stay tuned....<br />
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<br />Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com1tag:blogger.com,1999:blog-6831248887289437281.post-60771679680111964472012-07-05T23:07:00.000-07:002012-07-17T15:33:30.777-07:00Good news CAN lead to late postsJust got word today and basically the MRI looked stable. That is to say, nothing is growing in an alarming way. In fact, the results were so unimpressive that my next MRI will be held *two* months from now. So what led to the delay in reporting? As soon as I got the word, I decided it was time to start living my next two months. So I got ready and headed north for a fantastic annual kayak trip. I'll try to post more info upon my return. Have a great weekend!Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com7tag:blogger.com,1999:blog-6831248887289437281.post-75258960381821232902012-06-13T17:29:00.001-07:002012-06-13T17:29:55.766-07:00Yay!Just had the MRI today, and the results showed movement in the right direction, finally! Yes, there are still nasty looking tumor-esque spots in the image, but compared to the previous images, everything looked 50%-100% better. And trust me, I'm used to translating 50% success rates as wonderful news (I did major in physics after all).<br />
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Thanks to all of you for giving me motivation along the way.<br />
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I start my next round of Temodar tomorrow night. Let's see if I can maintain or even improve my energy levels from the last one. Just call me Iron Man....Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com9tag:blogger.com,1999:blog-6831248887289437281.post-81255932383089648952012-05-19T23:39:00.000-07:002012-05-19T23:41:04.308-07:00So? How did it go?!?<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;">Before I answer that, I need to explain the ground rules I was following. Understand that even though I am generally known as a more "traditional" scientist, most of the "alternative" medicines I looked into were things not generally pushed by my standard oncologist. However, <b>as</b> a more traditional scientist, I resisted adding those "alternatives" that would potentially conflict with the "standard" medical drugs or otherwise compete with any of my daily passions, pulling me away from any of the people or activities that bring joy to my life. So, how did it go? First the approach.</span></div>
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<span style="font-size: small;">WARNING: This might feel a little gross, so read at your own risk!</span></div>
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<span style="font-size: small;"><u>Alternatives that are now taken daily with the intent to improve energy and resist infection:</u></span></div>
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<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Turmeric: Morning, 2 pills, 395 mg/pill</span><br /><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">AHCC: Morning and Eve, 1 pill each, 500 mg/pill</span><br /><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Energy Vitality: Morning and Eve, 1 pill each (mainly ginseng)</span></span> </div>
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<span style="font-size: small;">Vitamins: Morning and sometimes evening depending on my "mood" and what else I ate</span></div>
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<span style="font-size: small;"><u>Required medications:</u></span></div>
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<span style="font-size: small;">Zofran: 5 days, 1 hour before Temodar</span></div>
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<span style="font-size: small;">Temodar: 5 days, scheduled right before going to sleep</span></div>
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<span style="font-size: small;"><u>Laxatives and stool softeners:</u></span></div>
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<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Polyethylene Glycol: Mixed with smoothies every morning and water every night</span><br /><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Docusate Sodium: Pills taken most mornings</span></span></div>
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<span style="font-size: small;"><u>Choices for eating:</u></span></div>
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<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I tried to eat things containing lots of iron and/or things with high
fiber. These included: burritos with beans and broccoli, hamburgers or other meats,
spinach salads, salmon, and smoothies with lots of
blueberries.</span></span><span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Things that didn’t go very far
included: dried fruits, nuts, and a liquid iron, all things rejected by my taste buds.</span></span></div>
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<span style="font-size: small;"><u><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Results:</span></u></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">After Day 1 of the Temodar, I was given my first dose of Avastin. Amazingly I never noticed any real side effects from that. The plan is to hold off until after the next MRI to see if more needs to be added. Continuing with the Temodar, after Day 3 I definitely noticed some fatigue, but still pushed through a normal day. By Day 4 I definitely noticed a decrease in energy. However, for the next 3 days, the energy was never completely lost, and often returned to some degree after a nap or an "irony" meal. </span></span><span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The "alternative" medicines also might have helped to fight that sleepiness. </span></span><span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The stool
softeners in general seemed to work, but I also think that Metamucil
might actually work as well, and is a little more "natural" over all. Either way, this was less of a worry since most of this was easily controlled in the "old days".</span></span><span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span></span></div>
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<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br /></span></span></div>
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<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><u>Conclusion</u>: </span></span></div>
<div style="font-family: Georgia,"Times New Roman",serif;">
<span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Compared to <a href="http://42staples.blogspot.com/2010/02/late-latest.html" target="_blank">the first go-around</a>, this was definitely a successful experiment with respect to energy</span></span><span style="font-size: small;"><span id="internal-source-marker_0.21209776763825805" style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">, evidenced by the fact that I managed to go to work part-time every day that week. I think there is a fundamental limit for maintaining energy, since iron is <b>indirectly</b> depleted through reduction of <a href="http://www.chemocare.com/bio/temodar.asp" target="_blank">the blood cells</a> (the reverse of "<a href="http://www.nhlbi.nih.gov/health/health-topics/topics/ida/" target="_blank">iron deficiency anemia</a>"), so adding iron externally cannot sufficiently compensate. Interestingly enough, there are still some other problems to solve. My emotional attitude certainly dropped significantly during the Temodar, as happened <a href="http://42staples.blogspot.com/2010/02/late-latest.html" target="_blank">before</a>. Whether that is my own attitude or an actual chemical reaction from the drugs or the diet remains to be seen. That said, overall it seems like I'm on the right path. We'll know more for sure when I have the next MRI in June.<br />
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<span style="font-size: small;"><br /></span></div>Loganhttp://www.blogger.com/profile/13510247435498269100noreply@blogger.com4