tag:blogger.com,1999:blog-6740114477238912962024-03-14T02:08:55.069-06:00Living Life FuriouslyMy life with stage IV breast cancer. Please follow me on Twitter @LuluChange14. Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.comBlogger42125tag:blogger.com,1999:blog-674011447723891296.post-61548133959035903112016-07-06T15:35:00.001-06:002016-07-06T15:35:26.516-06:00When your mane falls down<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-VHfnEOqz5Wo/V314yStXetI/AAAAAAABYb8/PNxCYQnxfKU4f_ga5A6ySCa1ICVpHAnNwCLcB/s1600/1-IMG_1197.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://2.bp.blogspot.com/-VHfnEOqz5Wo/V314yStXetI/AAAAAAABYb8/PNxCYQnxfKU4f_ga5A6ySCa1ICVpHAnNwCLcB/s320/1-IMG_1197.JPG" width="320" /></a></div>
<br /><div class="MsoNormal">
When I was on Safari in South Africa last year, the game
rangers told us an interesting story about zebras. Apparently, zebras always
look fat even when they are starving. Ill zebras are protected by this
well-covered look to fool predators and you can never tell how ill a zebra is
until it is too late. It only becomes apparent how ill the zebra is when the
fat around the mane disappears and the mane falls down. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
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<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The first time my mane started to fall down was when I was
on Xeloda and my feet were so badly damaged by the drug that I had to walk with
a stick. I was tired after my long flight from Johannesburg to Mauritius and
one of the staff directed me to the short line. I did not argue about being
sent to what was an unlabeled disability line. </div>
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<a href="https://3.bp.blogspot.com/-86EvV6wqZdE/V315XGDVDWI/AAAAAAABYcI/0sokcauSdlkXvvLQ2HZFy3Vn02OmQ5ogACLcB/s1600/1-DSCN5186.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://3.bp.blogspot.com/-86EvV6wqZdE/V315XGDVDWI/AAAAAAABYcI/0sokcauSdlkXvvLQ2HZFy3Vn02OmQ5ogACLcB/s320/1-DSCN5186.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was in so much pain that it
was clear that my mane had drooped even if it had not entirely fallen down. If
I had known how much worse things would get as this disease takes its toll, I would not have wasted so much
time feeling sorry for myself (a full five minutes).<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But my mane puffed up again and I breezed through a few more
chemos before my mane started doing some serious drooping again with this lung
issue.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This week has been tiresome and my willpower is challenged
daily. This crushing fatigue really wears a person down and stands in the way
of getting anything done. </div>
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<a href="https://3.bp.blogspot.com/-5TuCpZF4AoU/V315huidI3I/AAAAAAABYcM/sDvjXZ_UiQ88G6xVOsu8W-T5xGI8A463QCLcB/s1600/1-IMG_1244.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://3.bp.blogspot.com/-5TuCpZF4AoU/V315huidI3I/AAAAAAABYcM/sDvjXZ_UiQ88G6xVOsu8W-T5xGI8A463QCLcB/s320/1-IMG_1244.JPG" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m not
coughing so horribly now after finishing the two antibiotics but the edema is
annoying. Lasix only does a half-hearted job of removing it. I only aim to do
5000 steps a day now, but I still get up every day so I’m still winning. Fortunately,
I can work from home and do just enough to fool some of the people some of the
time that I am working. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
So this is what happened: Yesterday, I went to the dentist
for my regular cleaning and I made another appointment for six months. Truth or
optimism?<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com0tag:blogger.com,1999:blog-674011447723891296.post-25548193707261018742016-06-29T18:13:00.000-06:002016-06-29T18:13:09.782-06:00Another chemo.<div class="MsoNormal">
Started Doxil yesterday. Navelbine did not halt the steady
progression on my pleura. Although my bones have shown little progression since
the initial metastatic diagnosis three years ago and my liver has been stable for over a
year, the pleura of my right lung will not quit raging. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-XGRKzk8dFGc/V3RiqNLx1hI/AAAAAAABYbY/SKo-dGUegoY5hu3rhw1m24ZPo-otUwFpQCLcB/s1600/1-IMG_0766.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-XGRKzk8dFGc/V3RiqNLx1hI/AAAAAAABYbY/SKo-dGUegoY5hu3rhw1m24ZPo-otUwFpQCLcB/s320/1-IMG_0766.JPG" width="213" /></a></div>
<div class="MsoNormal">
The latest installment in the tsunami of metastatic disease
began at the end of March. I was at WonderCon in LA and I was having difficulty
walking. Every time I walked 10 steps, it felt like my heart would burst. I also
started coughing. By the time I got back to Denver, I was in trouble. I called
the nurse and she made an appointment with the oncology NP for as soon as I
could get there. An x-ray showed the lung almost completely collapsed. There
was a sliver of air but the rest was filled with fluid. The NP walked me over
to the Emergency Department and a troop of doctors in training were brought into
admire the x-ray. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Draining the lung (thoracentesis) made me feel a bit better.
Basically, they put a small catheter into the space around the lungs and gently
siphon off the fluid. I coughed all the way through the procedure. This was not
a gentle cough. This was coughing like your lung is deciding whether to even
stay in the chest cavity. It felt like I was drowning and every time I
spluttered to the surface, down I would go again. After about a half-hour, I
was one liter and two pounds lighter and they stopped. A few days later, it was
back for a liter-and-a-half. After that it was two liters a week until I
finished the semester, went to a conference, walked in a 10k and had time to
schedule surgery. <o:p></o:p></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-SWhd1-W6QAM/V3RjE28bGFI/AAAAAAABYbg/7yUnqI0JFbkc3t0dyNsG6vp8jW5U4T9yACLcB/s1600/1-IMG_20160530_065000437.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://2.bp.blogspot.com/-SWhd1-W6QAM/V3RjE28bGFI/AAAAAAABYbg/7yUnqI0JFbkc3t0dyNsG6vp8jW5U4T9yACLcB/s320/1-IMG_20160530_065000437.jpg" width="320" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I had the surgery (pleurodesis) at the beginning of June. In
a pleurodesis the surgeon, puts talc between the lung and its lining to cause
an inflammation that results in a closing of the gap so that no more fluid can
escape into the area between the lung and lining. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Before the surgeon could add the talc, he first drained
three more liters from the lung. (The total capacity of a lung is
three-and-a-half-liters.) The surgeon is quite a dour young man and I was
greeted in the recovery room with the news that my lung had not expanded and
the surgery was unlikely to be a complete success. I pretty much flipped out on
the inside then though I managed to nod with some semblance of a normal person.
In my defense, I was groggy and vomiting from the anesthetic, and had tubes and
wires escaping from my entire body. Four anti-emetics later, I was calm enough
for a chest xray and the good news that the lung was unfurling. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I really didn’t like the morphine IV and asked them to take
it down and just give me an Aleve. Of course they wouldn’t until I had gone 24
hours without hitting the lalaland button on the IV. Now, I’m no stoic when it
comes to pain. I’ll reach for a NSAID as fast as the next person but this was
honestly not that painful. Sure, the drain pinched when I moved or coughed but
this was not “bring on the good drugs” kind of pain. After all, the lungs have
no pain receptors. One of the nurses told me that most patients with the exact
same surgery are screaming for analgesia every two hours. Some people just like drugs. The siren song of
psychoactive drugs is just irresistible for some people. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<h4>
Where am I now? </h4>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
I have a lot of edema. When I spend time on my feet, they
swell up so much, my balance is affected. I’m still short of breath and
struggle to walk at a normal pace. I still have a temporary drain (pleurx
catheter) and I’m on a schedule to drain the lung weekly. Hardly any fluid is
draining so that should come out soon. Having a tube hanging out your chest is
pitiful. You can’t swim or get it wet so no soaking in the hot tub. If my
options had been a weekly thoracentisis or a pleurx catheter, the thoracentisis
would win every time.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Coughing has still been awesome. It reminds me of having whooping
cough as a child. So off I went for a chest xray and I have pneumonia so no 4-miler
for me on July 4.<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com4tag:blogger.com,1999:blog-674011447723891296.post-69572817456221137932016-03-23T10:30:00.003-06:002016-03-23T10:42:28.987-06:00Genomic profiling of male breast cancer. summary<span style="font-family: "arial" , "helvetica" , sans-serif;">Burki, T.K. (2016). Genomic profiling of male breast cancer. The Lancet Oncology.<br /><br />This brief article added to robust research in the area of the biological differences between male and female breast cancers.<br /><br />Subjects were 59 male breast cancer patients, all were ER+ and 57 were HER2-. All exons (parts of the gene) of the 241 genes that commonly mutate in female breast cancer or are involved in DNA repair were the focus of the sequencing.<br /><br />Analysis showed similar mutation patterns in males and females when compared with The Cancer Genome Atlas (TCGA) study.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Exceptions
were: <o:p></o:p></span></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
</div>
<ul>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 107%; text-indent: -0.25in;">1.<span style="font-stretch: normal; line-height: normal;"> </span></span><span style="line-height: 107%; text-indent: -0.25in;">In
male breast cancer, genes involved in DNA repair were more frequently mutated
than in female breast cancer.</span></span></li>
<li><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="line-height: 107%; text-indent: -0.25in;">2.<span style="font-stretch: normal; line-height: normal;"> </span></span><span style="line-height: 107%; text-indent: -0.25in;">Both
male and female breast cancer had mutations in “genes such as <i>PIK3CA,
GATA3, MAP3K1</i>, and <i>TP53</i>.” The
main differences were that these mutations were more common in female breast
cancer. (E.g., PIK3CA: 42% in female to 18% in ER+, HER2- male breast cancers.
This is important because this mutation is the second most common mutation in
female breast cancer and has been identified as a target for treatment.) Consequently, this finding emphasized the
care needed in applying trials from female breast cancer to male breast cancer cautions
Reis-Filho from Memorial Sloan Kettering.</span></span></li>
</ul>
<!--[if !supportLists]--><span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Valerie
Spiers from Leeds University sees the differences at the biological level of
male and female breast cancer as support for treating male and female breast
cancer as different diseases that may indicate the need for “male-focused
breast cancer clinics.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Finally, Reis-Filho
notes that the number of sequenced genes was incomplete and consequently did
not identify specific mutations found only in male and not female breast cancers.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">My final comment: If this is not new, why has so little been done?</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "arial" , "helvetica" , sans-serif;">My final
final comment: Did anyone else to a double take when reading the part about 241
genes. I checked. It’s not a typo. <o:p></o:p></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<br />
<div class="MsoNormal">
<br /></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com3tag:blogger.com,1999:blog-674011447723891296.post-82383536626095310612016-03-18T13:42:00.000-06:002016-03-18T13:42:00.521-06:00Am I still me?<div class="MsoNormal">
The sicker I get, the more of a stranger to myself I become. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Time used to be measured by teaching days and holidays. Now time is measured by
weekly infusions, daily neupogen injections, monthly xgeva injections, teaching
days, and recovery days. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I used to stride at full speed down the corridors of
academia and now I walk slowly. I’d like to say I walk thoughtfully but that is
what I’m pretending to do. I’m actually just concentrating on not making it
obvious that I’m completely out of breath. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I stand at the bottom of a flight of maybe a dozen stairs
and I wonder who this person is who is drawing on every last energy cell to
climb them. This is not the person who, six months ago, could run up seven
flights of stairs chatting and laughing. Now all flights of stairs are my Rocky
stairs. Climbing them feels like a mile sprint even as I know that I will never
sprint a mile again, or even jog one. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>I am</i> does not abruptly become <i>she was</i> when we die. <i>I am </i>is chipped away by the disease and
treatment.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I walk past a window and inadvertently catch my reflection
in the glass. I don’t recognize the ashen face. My pace slows down with each
stop and rest but my reflection is a time-lapse played at 100 frames a second. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The pallor from yesterday has given way to the waxen
bloodlessness of today. This illness has robbed me of the normality of adapting
to my slowly aging body. The morphing of childhood to adult to middle age is abruptly
set to fast-forward.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I still go to work and pretend that I can do it all. I’m
lucky to still be on the same treatment for 8 months. However, even as the
carbo/gemzar combo keeps the cancer in check, it weakens my body. My oncologist
keeps saying there are many more treatments. However, the unspoken words are
that my body will break down before the treatments end. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In less than two months, it will be three years since my
diagnosis of metastatic breast cancer. I have reached the median survival time. This is my 13<sup>th</sup> treatment. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i>I am</i> and <i>she was</i> edge closer together. </div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
We don’t need more treatments. We need better ones. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com4tag:blogger.com,1999:blog-674011447723891296.post-6741310112416692502016-02-28T12:35:00.000-07:002016-02-28T12:40:46.521-07:00Summary of "Randomized Trial of a Physical Activity Intervention in Women With Metastatic Breast Cancer"<div class="MsoNormal">
<div class="MsoNormal">
<b>Randomized Trial of a Physical Activity Intervention in
Women With Metastatic Breast Cancer</b> was the official title<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then there was the completely misleading title in practiceupdate.com:<o:p></o:p></div>
<div class="MsoNormal">
<b>Exercise No Aid to Functioning With Advanced Breast Cancer</b><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Shame on them. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I would title this study: <b>Too Little, Too Late</b><o:p></o:p></div>
<div class="MsoNormal">
Finding: There was no significant improvement in “physical
functioning” in women in the exercise group.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Participants were recruited between September 2006 and March
2011. This study took five years to publish.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
There were 101 women initially enrolled in the study but
three were dropped before it began.<br />
<br />
Consequently baseline data was collected
for 98 women (47 in exercise and 51 in control group). <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
The average time since metastatic disease for those in the
exercise group was 26.4 months and in the control group was 20.4 months. If I
look back on how I felt six months ago, that feels like a lifetime. <o:p></o:p></div>
<div class="MsoNormal">
There was enormous attrition with 30 patients who did not
complete the entire study (20 from the exercise group and 10 from the control
group).<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
That left 27 in the exercise group and 41 in the control
group who completed the entire study, including the treadmill test. Not
surprisingly, women having chemotherapy or had the metastatic diagnosis for a
longer period were more likely to not complete the exercise intervention.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Women in the intervention group increased their exercise by
64.2 minutes a week compared to the control group of 46 minutes a week (2.6
minutes a day by the exercise group if you are not subtracting).<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
If you add number of minutes exercise at baseline with the
increase in minutes then the control group actually ended up doing more
exercise than the treatment group (125.2 min/week vs 119.9). Are we still
surprised that there was no difference in outcomes? <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My conclusion: Women with only a few months to live are not
interested in fighting the fatigue of treatment to start exercising for no
known benefit when they have not been exercising before. If there is a Razzie
for bullshit science, this gets my nomination. <o:p></o:p></div>
<br />
<div class="MsoNormal">
<br /></div>
</div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com5tag:blogger.com,1999:blog-674011447723891296.post-2685456099090382632015-11-28T17:16:00.002-07:002015-11-28T17:21:20.951-07:00Why am I so tired?<span style="font-family: Arial, Helvetica, sans-serif;">According to the Mayo Clinic, “The exact causes of cancer fatigue and how best to treat it aren't always clear.” The website then goes on to list possible causes from the cancer and/or the treatment. Not included in the list is the ongoing treatment for cancer is as much of a time-suck as a second unpaid job. When you already work 60 or more hours a week, you just never seem to be able to come up for air.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Like most people, the demands of living vary by the day or even hour. We stop everything to deal with the current crisis or claims on our time. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">A typical day may look like this. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I struggle through the night, beating off the doubts and fears that a terminal diagnosis sends to disrupt sleep. Finally, morning arrives and somewhere between 4:30 AM and 5:30 AM, I let the dog out. She crawls into bed with me and snuggles close. If I’m lucky, I’ll catch a nap. If not, I’ll give up and try to get a head start. The day begins with coffee and a Neupogen injection before swallowing another Kytril and taking the dog for a walk. Time to check work email. Depending on the weather, I then exercise on the treadmill or outside. Getting ready for the day requires an annoying number of rests that slow me down. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I either walk or drive to the station, then catch the light rail to work. By the time I get to my office there are a stream of students waiting to see me even though it’s not official office hours. I triage problems in between getting ready to teach classes. After teaching, I try to squeeze in a sandwich in the scheduled break before official office hours. Mostly, my lunch goes uneaten until late afternoon. The nausea starts to creep back into my consciousness but I figure it will pass so I bypass the Kytril because it makes me feel even more tired. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I see students for academic advising, career advising or just being a shoulder to cry on. I listen to the hopes and dreams and tragic stories that exhilarate and tear at me. I hear the stories of childhood abuse, of rape, of heroin addiction. I try to calm difficult people. My body longs for me to put my head down for just five minutes but those breaks are rare. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">There is always another student, another meeting, or another email. Some time after 6 PM, I’m ready to leave. I put on my coat and walk to the station in a dull fog of exhaustion. I stop to vomit because I should have taken a few minutes to take a Kytril. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">I reverse the trip from the morning, get home, and take the dog for a walk while my husband rustles up some leftovers for dinner. But dinner is not the end of my day. I do the emergency cleaning, and then open my laptop. I have the next day to prepare for. There will be different students, different heartbreaking stories, different classes and different meetings. There will be research to read, data to analyze, and letters of reference and papers to write. Each event requires a different skill set and different preparation. In between, I can never find enough time to clean and cook, to spend time with my family, to read, and to connect with my friends on Twitter. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Once a week for two weeks out of every three, I make the 2-hour drive and present myself at the infusion center to have my day snatched away as nurses fill my veins with kytril, dexamethasone, gemzar and carboplatin. This cocktail is guaranteed to make me sick and tired but not guaranteed to improve my health. And again, two days later, the chemicals extract their real price on my body and time as I sit huddled on the couch with my laptop open, trying to make sense of the words that swirl on the page. The unique fatigue that accompanies chemotherapy closes my eyes without my permission and I lose another half-hour to a restless nap that came unbidden. Each moment the disease and treatment snatch from me is a moment that goes into my time debt that will paid out of time I would rather spend choosing my activity. </span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">Always, time is the enemy. Fatigue is its indomitable weapon.</span>Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com0tag:blogger.com,1999:blog-674011447723891296.post-31318600211949085482015-11-23T08:45:00.000-07:002015-11-23T08:45:46.077-07:00How many lives?<div class="MsoNormal">
These are the anecdotes I love to share with my children to remind them how lucky they are to be here.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’m not sure if it is just me, but there is something about
knowing that I am definitely on my last life that triggers the memory of the
number of times, through sheer luck, I have ducked when the grim reaper came to
call. And these are just the times I know about. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The earliest episodes for me are lost in childhood amnesia
but the stories were often told.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
When I was a baby, my birth mother was apparently mentally
unstable. I’m not sure what that means. The description given to me was much
harsher. However, in those days stigma of mental illness was even greater than
it is now, and treatment was even poorer. I cannot even imagine the demons that
were fighting in her head. One day, she just packed up and left her husband and
children and disappeared into the silence of a world where you could leave no
digital footprint. Over the years, I have truly valued my mental health and it
remains an open question if I would have survived physically and mentally had
she stayed. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At three years old, I had just been adopted. I was playing
hide-and-seek with my siblings one evening while we were vacationing in a remote
area on the coast. The cottage we stayed at was near a cliff that plunged about
100 feet in a steep drop to the waves crashing on the rocks below. My siblings
went inside and no one noticed I was missing for a few hours. When it came time
for bed and I could not be found, everyone went to search. At about midnight
they eventually abandoned the search. Next morning, I tottered to the cottage
and pointed out the bush I had slept under all night. It was just 50 yards from
the edge of the cliff.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was five or six when my brother and I woke up early one
morning to play with fireworks. We didn’t want to wake the parents so we walked
a bit away from the house. My brother lit the fireworks and then accidently lit
my clothes. In a few seconds, they were blazing. Fortunately, my nanny was not
far away and saw me. She stripped off the burning clothes before too much
damage was done. I have only a small scar on my side and even that has just
about faded. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I was born before the measles vaccine. Now, there is a Zulu
saying that you don’t count your children before the measles. I was one of those
children who should not have been counted. As I struggled to breathe from a
secondary pneumonia infection, the priest was called. My parents were not
religious people, but the fear of a child dying without the necessary last rites
scared them. The scars left on my lungs have given many a radiologist pause.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
No one knows how I contracted infective hepatitis (Hep A) at
11. There were three of us that did in our town. Two were siblings and I had
nothing in common with them. One of the siblings died. I was at bedrest for six
months. The only long-term effect was that I have never been able to drink more
than the smallest amount of alcohol and of course, I was banned for life from
donating blood. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I used to work as a surgical intensive care nurse. It was
extremely stressful as I dealt with knife and bullet wounds, patients who had
been thrown out of moving cars, and regular open heart surgery cases.
Sometimes, we were called to give evidence in court. I never thought of it as dangerous until I was
stalked by a man accused of murdering one of my patients. He confronted me in a
parking garage and informed me that I was not to testify at all about the
patient unless I told the story he would give me. Or else. The next day, I gave
a deposition and booked a flight to Europe. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I don’t have fond memories of Italy. While in Italy, I was
walking along a quiet road when suddenly a group of young men with knives
surrounded me. Fortunately, I spotted an older man carrying a walking stick and
I ran up to him as though I knew him. The hooligans melted away. He was from
their village. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My second son was a few months old and my husband was
driving. I was sitting in the front passenger seat. The little one was strapped
in his car seat at the back but he was restless. We were in the middle of the
city so I got out and went to sit in the back to distract the baby so that my
husband could concentrate on driving. My husband stopped at the red light and
when it turned green, checked that nothing was coming and moved forward.
Suddenly a car driven by a drunk driver came storming through the red light and
hit the front passenger side, crushing it into the driver’s side. We walked
away from the accident unharmed but there was nothing left of the car. The
police offers all agreed that I could not have survived if I had not switched
seats. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
I was diagnosed with metastatic breast cancer just over
two-and-a-half years ago. Every morning when I wake up, I punch the air in
victory. I survived one more day. But I also punch in frustration because my death
is just another unnecessary death. So much money collected in the name of
finding a cure has been squandered on broken promises. The war we have now been
conscripted into is not for our own lives. It is too late for that. We are
forced to fight for women who will come after us. We are forced to stand up and
say no to the idiotic pink ribbons and expose the scam that will result in
521,900 lives discarded in the wasteland of greed and apathy every year. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com1tag:blogger.com,1999:blog-674011447723891296.post-6398205187778105032015-11-14T17:29:00.006-07:002015-11-14T17:32:58.778-07:00When an ordinary life ends<br />
<div class="MsoNormal">
There is no timetable for grief but the average resilient
person experiences intense mourning after the death of a loved one for about
seven to twelve weeks. For those weeks, we question the purpose of life, we may
cry, we may scream, and we often long for just one more day with the one we
lost. And then the pain starts to come less often and without the same
intensity. Slowly we recover our momentum and we go on.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I’ve been thinking about that lately.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My husband has been part of my life for my entire adulthood.
We have raised our children and cried together with the tragedies that life
brings, but we have laughed more than cried. We agree and disagree many times
every day but we talk every day. He will face my death in quiet grief as he
sits in front of the computer pretending to be busy. He will continue to take
care of the children and the dog and never let anyone down. He will be there
for them when they call but will likely not call them for help for anything. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My children’s memories will fade and special events such as
weddings and babies may trigger mourning but they will forget the Mom I was. They
will never remember the nights I spent pacing up and down with a crying baby
that could not sleep, the nights spent rocking children through earaches and
colds and feeling sick. I remember the events that they will never remember.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I think about a lifetime
ago when I never got the chance to sleep through the night for years on-end. I
think about the 12 years I spent pregnant or breastfeeding 4 children. I think
about the mindless games I played with them to keep them occupied on long car
rides, the trips we took to Disney World and the weekly museum trips two hours
from home, the endless rides to activities, and the music / swimming / tennis
lessons. I shared my love of Star Wars, comics, conventions and great movies. I taught them to ride a bike, to drive a car, to
care, and to be socially responsible and curious. I taught them to read and
love books, to write, to do math, to use technology, to do calculus. I taught
them to solve problems and think scientifically and be compassionate. I taught
them how to do their own laundry, to cook, to love unconditionally and to never
ever be prejudiced. They did not learn everything I taught them but then most of
the lessons we learn are honed by life. My son once said to me that his deepest
regret was that he could not be a writer because all writers have a terrible
childhood and I deprived him of one.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I hope they remember me how I was and not the weak and
fragile being I am becoming. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
They will mourn for me but they will recover and move on.
They will forget what wisdom came from their mother and what they learned from
somewhere else. Mostly, they will believe that they learned it on their own and
that will be true because that is how we live our lives. Despite the foibles of
being human, I always tried to model the best that I could be. I was
over-protective, held them to high expectations, and loved them
unconditionally. I also trusted that they did their best just as I tried to do
mine. They will find others to do the things I do for them or they will just do
it themselves. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have been the department mom to thousands of students.
Only some will even remember my name. However, some will remember my endless
stories, my encouragement and my hopes for their futures.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
In seven weeks, memories of those who loved me will start to
change. The events and actions in my life will be less meaningful. They will talk
about me less. Although I remain alive while they are alive, the intensity of
my life will have started to fade in just 49 days.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To paraphrase T S Eliot:<o:p></o:p></div>
<div class="MsoNormal">
This is the way my life ends<o:p></o:p></div>
Not with a bang but a whimper.<br />
<div class="MsoNormal">
<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com5tag:blogger.com,1999:blog-674011447723891296.post-33006233660346094582015-11-06T14:19:00.002-07:002015-11-06T14:19:58.389-07:00Update after my October scan<div class="MsoNormal">
A hassidic rebbe once said, “Let me not die while I am still
alive.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My
life has been a blur of work (65 hours a week) and hospital visits and
exercise. I keep asking myself why I am spending so much time on work as I’m
not even sure if this is my last semester. The truth is that I have always
worked like this and I’m making darn sure that I end that way too. Of course,
no one at work has any idea of what else I balance to work as I do and I don’t
intend to give them any reason to. I’ve had a couple of days when I find it
really difficult to haul my butt to the uni but once I’m there, automatic mode
and the enthusiasm of youth takes over and I do my 10 hours. And I am grateful
for flexible hours, and a job that is not physically demanding. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Living with metastatic breast cancer is a tsunami. We just
try to keep our heads above water for as long as possible. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Onto my scan. One delightful word: stable. I stay on the
Gemzar and Carboplatin for the time being. My liver disease is the biggest
threat I face right now.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
A couple of positive changes have happened as well. I got a
dog from the puppy rescue. She’s a delightful, energetic dachshund mix. And I
do not understate the mix part. She is part of many breeds but although she is
only six pounds of love at five months old, she has the speed of a greyhound
and all the hunting instinct of a dachshund. She follows me around everywhere –
no quiet bathroom breaks allowed. She also drags me out of the house in all
weather for morning and afternoon mile walks. Well, she tries to make it a run
but right now my hemoglobin is so low that I can barely run a few steps without
struggling for breath. (Aside: My hemoglobin is not low enough for a blood
transfusion yet, but it’s low enough for the infusion center to have to get
permission to treat. The blood transfusion cut off is below 7 (or else
symptomatic) but the infusion center cut off is below 9. Mine is 8.1 and
sliding down. I am never going to admit
to the doctor that I can no longer climb a single flight of stairs without
grasping the railing as though I have had a bit too much fun and waiting for my
heart to slow to a manageable pace. I fondly remember just a short time ago
when I could run up seven flights of stairs without a pause.) I still walk 50
miles a week outside or on the treadmill of course. That remains my priority.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The second bit of good news is that I got insurance
permission to give myself neupogen at home. This saves me driving for two hours
10 days out of every 21. Now, I don’t understand insurance at all. It costs
thousands more to have the neupogen in the infusion center than it does to give
myself the injections at home, but if I have it in the infusion center then I
have no co-pay. However, if I give myself the neupogen then I have a co-pay of
$125 every three weeks. It’s the same puzzle I had over my prescription for
dexamethasone. The insurance initially denied it, but after protest they
approved it. When I went to pick it up at the pharmacy, I saw that my co-pay
covered the entire cost. They had denied me a drug that I needed that actually
cost them nothing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The worst news of course was that I had a port placed. This
is an outward symbol that I have moved from living with breast cancer to dying
of it. It is incredibly painful as it is situated over a nerve that
unexpectedly launches shooting pains across my chest and down my arm,
paralyzing the right arm for a few seconds. Sometimes the pain is so bad that I
have to sit down before I faint.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
From the Mom the stress-o-meter department came a bout of
sheer terror. My son had major cardio-thoracic surgery and was in hospital for
a week. We had some scary days and nights, but he is home now on heavy pain
pills but recovering. He also has a seriously impressive scar across his chest.
He has a metal bar in his chest for six months so the recovery is not going to
be rapid. It is times like these that I am so thankful to still be alive. This
would have been so much more difficult if I had not been around to change dressings and be the Mom. The
good news on the children front is that my daughter broke up with her
boyfriend. It was not that he was a terrible person but he was clearly just not
going anywhere #RichKidSyndrome.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
On a wildly optimistic note, I bought tickets for the Harry
Potter show in London for December 2016. However, I am a realist and made a
backup plan in the likelihood that I won’t make it. My husband said that the
tickets were something to make sure I was alive for. I gently reminded him that
survival is not due to force of will. <o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com4tag:blogger.com,1999:blog-674011447723891296.post-89487024898966760712015-10-30T06:04:00.001-06:002015-10-30T06:05:52.772-06:00Surviving October<div class="MsoNormal">
I actually wrote this two weeks ago but am so caught up in trying to live that I never got a chance to post it.<br />
<br /></div>
<div class="MsoNormal">
As I trudge through my next cycle between scans, I’m intensely
vigilant for new symptoms, real and imagined. Of course, as the middle of
September rolls around, I’m on high alert to be insulted by a barrage of pink.
I passed a student with a t-shirt emblazoned in pink with “Volley for the cure”
punching through my polite passageway negotiation. I stiffened in rage. Not
only did that fundraiser not go for a cure but it diverted funds that might
have been better spent for a cure.<o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
Classes started in the middle of August so I am again
consumed by work and hospital visits. My current regimen of Gemzar and
Carboplatin is on a schedule of two weeks on and one off. The first cycle
started off well. My blood work was fine and I had the first dose. However,
when I went back a week later for the second dose, my WBC count was so low that
the infusion center had to call the oncologist before they could administer the
chemo. I was sent home feeling like I really had been hit by that proverbial
bus. The bouts of nausea and vomiting at unexpected times are a constant
reminder that I am caught in the outer edges of life, hovering in that no man’s
land between living and dying. <o:p></o:p></div>
<div class="MsoNormal">
Two weeks later, I again presented myself of the nurse visit
and blood work. This time, I was not so lucky. The oncologist said no chemo and
I was told to go home and come back in a week. This did not work for me. I
marched up to her rooms and saw my favorite nurse and asked her what could be
done. She talked it over with the oncologist and they settled on a daily dose
of neupogen for seven days. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
That is now my life. Chemo and neupogen injections mean
hospital visits 12 days out of 14 and then seven off. <o:p></o:p><br />
<br /></div>
<div class="MsoNormal">
I’m now on my 12<sup>th</sup> and 13<sup>th</sup> different
drugs to combat this disease. Some have worked for years and some have not
worked at all. The last three scans have showed progression as three sets of
treatment have failed. For over a decade, I have lived with side effects that
mimic medieval torture. <o:p></o:p></div>
<div class="MsoNormal">
I have known vomiting so bad that I lay on the bathroom
floor all night because there was no rest in between episodes. I have lost all my
hair. Nausea is as part of life as endlessly shedding toenails. I have lost
every nail on my fingers and toes and my toenails so many times, there is
rarely a period when I have all of them attached. I have had my skin on hands peel
off in shreds. I have had giant blisters randomly appear on my feet that caused
me to scream in agony when I took my shoes off. I have known what it like to
crawl on my hands and knees to the bathroom because I could not walk. I have
had diarrhea that caused me to lose 10% of my body weight – so that a scant 95ibs
hung on my 5ft 6in frame. I have known joint and muscle pain that crippled my
legs so I could barely walk. I have experienced fatigue that required me to
leave an extra hour just to shower and rest and get dressed and rest. I have
been so dehydrated that I fainted on the street. I have pins and needles in my
hands and feet all the time. My nose bleeds at random intervals. I have felt
broken so many times that I thought I could not go on. <o:p></o:p></div>
<br />
<div class="MsoNormal">
We do not need more treatments. We need better treatments.
We need a cure.<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com6tag:blogger.com,1999:blog-674011447723891296.post-23530770026264383622015-08-03T09:42:00.001-06:002015-08-03T09:42:33.283-06:00Living life in increments of 12 weeks. Part 1<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-size: large;">The period between scans is 12
weeks and so I can only plan for the next 12 weeks. I never know what the
treatment will be for the 12 weeks after that which means I cram the rest of my
life into these tiny gaps of time. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-size: large;">I’m also suddenly aware that I am
one step away from a catastrophic episode that could end my life.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-size: large;">It feels like a confession every
time I sum up to myself what it took to live those 12 weeks. Since my last scan
I have lived the good, the bad, the ugly and the insanely normal.</span></div>
<h4 style="margin-left: .25in;">
<span style="font-size: large;">The bad list reads like this:</span></h4>
<div class="MsoNormal" style="margin-left: .25in;">
</div>
<ol>
<li><span style="font-size: large;">My dog died</span></li>
<li><span style="font-size: large;">The immunization trial failed so I
went onto Xeloda</span></li>
<li><span style="font-size: large;">The Xeloda failed and my next 12
weeks will be on Carboplantin/Gemzar (IV chemo)</span></li>
<li><span style="font-size: large;">The burden of watching your life
slip away feels so heavy at times.</span></li>
</ol>
<br />
<h4 style="margin-left: .25in;">
<span style="font-size: large;">The good:</span></h4>
<div class="MsoNormal" style="margin-left: .25in;">
</div>
<ol>
<li><span style="font-size: large;">I took a trips to</span></li>
<ol>
<li><span style="font-size: large;"> </span><span style="font-size: large;">Seattle to visit my daughter and my good friend
Beth (</span><a href="https://twitter.com/CultPerfectMoms" style="font-size: x-large;"><span style="color: windowtext; text-decoration: none; text-underline: none;">@CultPerfectMoms </span></a><span style="font-size: large;">).</span></li>
<li><span style="font-size: large;">Johannesburg for a few days on my
way to</span></li>
<li><span style="font-size: large;">Safari in the Kruger National Park
in South Africa (where I met some wonderful people).</span></li>
<li><span style="font-size: large;">Mauritius with my husband (home of
the dodo)</span></li>
</ol>
</ol>
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<a href="http://1.bp.blogspot.com/-raxZttwVH08/Vb-LZpsW8oI/AAAAAAABX7A/-C35kz5MXeI/s1600/1-IMG_2612.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://1.bp.blogspot.com/-raxZttwVH08/Vb-LZpsW8oI/AAAAAAABX7A/-C35kz5MXeI/s320/1-IMG_2612.JPG" width="320" /></a></div>
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<a href="http://2.bp.blogspot.com/-0TnelgCFtoY/Vb-LwK7ln1I/AAAAAAABX7I/TgEdBW8PTj0/s1600/1-IMG_20150722_142836800.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="http://2.bp.blogspot.com/-0TnelgCFtoY/Vb-LwK7ln1I/AAAAAAABX7I/TgEdBW8PTj0/s320/1-IMG_20150722_142836800.jpg" width="320" /></a></div>
<div>
<span style="font-size: large;"><br /></span></div>
<ol>
<li><span style="font-size: large;">I collected another 60 or so books
from Comic-Con to read</span></li>
<li><span style="font-size: large;">I ran</span></li>
<ol>
<li><span style="font-size: large;">The Bolder/Boulder 10 k run with
husband</span></li>
<li><span style="font-size: large;">the 4-mile 4</span><sup>th</sup><span style="font-size: large;"> of July</span><span style="font-size: large;"> </span><span style="font-size: large;">run with husband and third son</span></li>
</ol>
<li><span style="font-size: large;">I wrote</span></li>
<ol>
<li><span style="font-size: large;">a paper</span></li>
<li><span style="font-size: large;">a short screen play</span></li>
</ol>
<li><span style="font-size: large;">I went to San Diego Comic-Con and
the San Diego Zoo with my husband and daughter</span></li>
<li><span style="font-size: large;">I went to VidCon in Anaheim and
then spent two days in Disneyland/California Adventure parks</span><span style="font-size: large;"> </span><span style="font-size: large;">with my third son</span></li>
<li><span style="font-size: large;">I went to a psychology conference
in New York City and visited my eldest son who calls every single Sunday night.</span></li>
<li><span style="font-size: large;">I took about 10,000 photos and
lots of video. (Wait! That should probably go under insanely normal.)</span></li>
</ol>
<br />
<h4 style="margin-left: .25in;">
<span style="font-size: large;">The ugly:</span></h4>
<div class="MsoNormal" style="margin-left: .25in;">
</div>
<ol>
<li><span style="font-size: large;">My feet and hands look as though
they have been through medieval torture. Most of my toenails have fallen off or
are about to.</span></li>
<li><span style="font-size: large;">The toxic effects of Xeloda kept
mounting up until it included high blood pressure, and nausea and vomiting.</span></li>
<li><span style="font-size: large;">I was bitten by a brown recluse
spider</span></li>
</ol>
<br />
<h4 style="margin-left: .25in;">
<span style="font-size: large;">The insanely normal:</span></h4>
<div class="MsoNormal" style="margin-left: .25in;">
</div>
<ol>
<li><span style="font-size: large;">I did Hangouts with my far-away children,
called them, texted them, and went to movies and dinner with my family when
they were around.</span></li>
<li><span style="font-size: large;">I watched my second son complete
his first triathlon</span></li>
<li><span style="font-size: large;">I exercise every single day to the
best of my ability given the condition of my feet. (This one is insanely normal
and good.)</span></li>
<li><span style="font-size: large;">I walked/ran 600 miles</span></li>
<li><span style="font-size: large;">I read</span></li>
<ol>
<li><span style="font-size: large;">Alan Turing: Unlocking the Enigma
by David Boyle (for the second time)</span></li>
<li><span style="font-size: large;">How Google Works by Eric Schmidt,
Jonathan Rosenburg, & Alan Eagle</span></li>
<li><span style="font-size: large;">Genghis Kahn and the Making of the
Modern World by Jack Weatherford</span></li>
<li><span style="font-size: large;">The Martian by Andy Weir</span></li>
<li><span style="font-size: large;">101 Kruger Tales by Jeff Gordon
(Editor)</span></li>
<li><span style="font-size: large;">Comics, comics, comics. I’m not
apologizing.</span></li>
</ol>
<li><span style="font-size: large;">I cooked, cleaned, and baked bread
a few times a week</span></li>
<li><span style="font-size: large;">I planned for the next 12 weeks</span></li>
<li><span style="font-size: large;">I was a professor, a mentor, a friend,
a wife, and a mother.</span></li>
</ol>
<br />
<div class="MsoNormal">
</div>
<div class="MsoNormal" style="margin-left: .25in;">
<o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com3tag:blogger.com,1999:blog-674011447723891296.post-18462056830851917152015-07-03T17:19:00.001-06:002015-08-07T16:48:46.713-06:00Not for the squeamish: Case study of urea for hand and foot syndrome on Xeloda: <div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-SsU3QKIWY8E/VZcc-k-npBI/AAAAAAABOd8/hMa60brhO7U/s1600/1-IMG_20150628_150010732.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="180" src="http://4.bp.blogspot.com/-SsU3QKIWY8E/VZcc-k-npBI/AAAAAAABOd8/hMa60brhO7U/s320/1-IMG_20150628_150010732.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-tWEs21sriX4/VZcW3THSecI/AAAAAAABOcQ/zKrjy2XAbAw/s1600/06-IMG_20150702_084654414%2B%2528450x800%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="http://1.bp.blogspot.com/-tWEs21sriX4/VZcW3THSecI/AAAAAAABOcQ/zKrjy2XAbAw/s320/06-IMG_20150702_084654414%2B%2528450x800%2529.jpg" width="180" /></a></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><b>Xeloda update.<o:p></o:p></b></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">(More Pics coming soon)</span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">This drug has definitely brought
me to the edge of despair. I know I should be sorry to say good-bye to it but
quite frankly, it was not worth it for me. This is not easy to admit because I am stoic and can endure but I still have to live my life and
go to work every day. Good-bye was far too easy.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
</div>
<ul>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">Flossing teeth can result in a
nasty cut on the hands as everything tears through the skin.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">Washing hair is best done with
gloves on because the hair catches on loose skin, tearing it.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">Bending your finger causes the
crease in your finger to open up into a painful gash.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">A bit of paper on your finger
turns out to be shredding skin. It’s best not to pull on it.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">A run tears up your feet so that
walking for the next 5 days feels as though you have broken glass underfoot –
trapped in your socks.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">The infernal tingling and burning
comes on at the most inconvenient times.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">Popping open a lid requires a
knife</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">If you have no one available to
unscrew the lid of a bottle, you go thirsty</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">You pick up everything that may be
remotely hot with a cloth because you cannot feel if you are burning.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">You cannot go to the hot tub – no soaking.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">Showering burns your hands and
feet like the devil.</span></li>
<li><span style="font-family: Times, 'Times New Roman', serif; font-size: large;">If something slips through your
fingers, it’s going to cause a great deal of pain. </span></li>
</ul>
<span style="font-family: Times, 'Times New Roman', serif; font-size: large;">I pick up the toothpaste and
balance it in my hand, trying it out, rolling it in my palm until I find a spot
where I can squeeze the tube without causing pain. But I can’t squeeze hard
enough. I’m going to have to collect a tool but my husband is there so I ask
him to do it. I marvel at the way he takes the tube and easily squeezes, asking
how much I want.</span><br />
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, 'Times New Roman', serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I watch him effortlessly open a
can with a can-opener and remember that I used to be able to do those things. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<h4 style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">What I wish I had known and
special thanks to @groz_P</span></h4>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">I wish I had known about Revitaderm
with 40% urea. It’s available from Amazon without a prescription. It softens
the skin so no more blisters. I hated pricking those never-ending blisters that
always formed. I put it on twice a day and over it, I put on Sudocrem. I have
to get that from the UK, It’s a nappy (diaper) rash treatment. According to the
nurse (who asked a pharmacist on my behalf), urea softens the skin so that
other treatments can penetrate through the skin. That’s why I add the Sudocrem
on top of the Revitaderm. It softens and heals. However, it does nothing for
the toenails and they keep popping off like popcorn in hot oil. OK, that has
put me off popcorn. Ignore that comparison. </span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">The skin still peels horribly but I
no longer have to keep putting on hundreds of Band-Aids and dressings. I just
have to add gauze to the most painful areas. I very rarely get to wear regular
shoes. I found a pair way too big for me and carefully arrange cotton padding
around my feet. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">In between I use shea butter to
moisturize and I love my white gloves. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;"><br /></span></div>
<br />
<div class="MsoNormal" style="margin-left: .25in;">
<span style="font-family: Times, Times New Roman, serif; font-size: large;">It’s been a week now since I
stopped the Xeloda. It will probably be a few more before my hands and feet
heal. All I know is that I could not go on like this. Every task was an effort
so that I balanced whether it was worth it or not. <o:p></o:p></span></div>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">The cost of a quiet walk.</span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><br /></span>
<span style="font-size: large;">Nasty pictures below:</span><br />
<br />
<div class="MsoNormal" style="line-height: 11.25pt; margin-bottom: .0001pt; margin-bottom: 0in; margin-left: 0in; margin-right: 7.5pt; margin-top: 0in;">
<br /></div>
<br />
<table border="1" style="width: 100%;"><tbody>
<tr><td><span style="font-size: large;">After 1 day </span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://4.bp.blogspot.com/-HCWGR0Zk0Mw/VZdAEKtWviI/AAAAAAABOfo/QdhQ9fCx6Ck/s1600/08-IMG_20150703_053818906.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-HCWGR0Zk0Mw/VZdAEKtWviI/AAAAAAABOfo/QdhQ9fCx6Ck/s320/08-IMG_20150703_053818906.jpg" width="180" /></a></div>
</td>
<td><a href="http://2.bp.blogspot.com/-ClnVkTjVHMI/VZdAEMKih9I/AAAAAAABOfk/RfBD_KtM4dc/s1600/09-IMG_20150703_053909284.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="320" src="http://2.bp.blogspot.com/-ClnVkTjVHMI/VZdAEMKih9I/AAAAAAABOfk/RfBD_KtM4dc/s320/09-IMG_20150703_053909284.jpg" width="180" /></a></td>
<td><a href="http://3.bp.blogspot.com/-qrqdHiViAz4/VZdAENWUxSI/AAAAAAABOfg/jiGzH2To1c4/s1600/10-IMG_20150703_054026779.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" height="112" src="http://3.bp.blogspot.com/-qrqdHiViAz4/VZdAENWUxSI/AAAAAAABOfg/jiGzH2To1c4/s200/10-IMG_20150703_054026779.jpg" width="200" /></a></td>
</tr>
<tr>
<td><a href="http://4.bp.blogspot.com/-3umSuCoQy0U/VZc-_Wmz98I/AAAAAAABOfE/ZR6UIHNBKQw/s1600/01-IMG_20150701_215347171.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="http://4.bp.blogspot.com/-3umSuCoQy0U/VZc-_Wmz98I/AAAAAAABOfE/ZR6UIHNBKQw/s320/01-IMG_20150701_215347171.jpg" width="180" /></a><span style="font-size: large;">Before treatment</span></td>
<td><a href="http://4.bp.blogspot.com/-GZusHCu9MpQ/VZc_fEI3VgI/AAAAAAABOfM/XSy-bIkPc6s/s1600/02-IMG_20150701_215502744.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="320" src="http://4.bp.blogspot.com/-GZusHCu9MpQ/VZc_fEI3VgI/AAAAAAABOfM/XSy-bIkPc6s/s320/02-IMG_20150701_215502744.jpg" width="180" /></a></td>
<td><a href="http://3.bp.blogspot.com/-FOXna7vM914/VZc_g3NQGxI/AAAAAAABOfU/QkQvh3LGnDU/s1600/05-IMG_20150701_215828843.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" height="133" src="http://3.bp.blogspot.com/-FOXna7vM914/VZc_g3NQGxI/AAAAAAABOfU/QkQvh3LGnDU/s200/05-IMG_20150701_215828843.jpg" width="200" /></a></td>
</tr>
</tbody></table>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com2tag:blogger.com,1999:blog-674011447723891296.post-71651311422486630952015-06-26T12:30:00.000-06:002015-06-26T12:30:02.229-06:00When a pet dies and you are dying<div class="separator" style="clear: both; text-align: center;">
<a href="http://2.bp.blogspot.com/-UJak4ZzMHdo/VY2ZrMq9TwI/AAAAAAABN_g/lFMU1gF92vU/s1600/Darling.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" src="http://2.bp.blogspot.com/-UJak4ZzMHdo/VY2ZrMq9TwI/AAAAAAABN_g/lFMU1gF92vU/s320/Darling.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">There is sorrow enough in the natural way<br />
From men and women to fill our day;<br />
But when we are certain of sorrow in store<br />
Why do we always arrange for more?<br />
Brothers and sisters I bid you beware<br />
Of giving your heart to a dog to tear.<br />
-Rudyard Kipling<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Until one has loved an animal,<br />
a part of one's soul remains unawakened.<br />
-Anatole France<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">The fidelity of a dog is a precious gift demanding no less<br />
binding moral responsibilities than the friendship of a<br />
human being. The bond with a dog is as lasting as the<br />
ties of this earth can ever be."<br />
- Konrad Lorenz<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">I hear a scratch at the door and I walk towards it, but it
is just the wind. I see her on the couch and my heart leaps, but it is a
shadow. I feel a movement at the foot of my bed and I bend down to pat her, but
the pillow is empty. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">There is a saying that when one door closes another opens.
It reflects the choices we make. Sometimes there is later regret, but most often
we believe that door is not permanently closed. We can finish our degree or
learn that new skill or language later. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">When you are terminally ill, however, doors slam and lock
closed. We live in the constant unpredictability of a disease where the only certainty
is progression. Easy decisions are made difficult. Should we invest in new
running shoes, new spectacles, new underwear or even that large size laundry
detergent? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Nothing is quite like the crashing of a door blocked by a rockfall
that happens when a pet dies. You know with certainty that a new pet will
outlive you. You will never have time to build a new relationship. Even the
decision to get another pet is ripped from you because you know someone else is
going to have to take care of it when you are gone.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">You have no time to mourn slowly and you mourn intensely.
The grief is expressed in loud sobs that rack your body and soul as you try to
let out the overwhelming pain and you wonder why there is so much hurt in the
world. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<div class="MsoNormal">
<span style="font-size: large;">Your friend, companion and treasure has gone. There is no
enthusiastic welcome when you come in the door. There is no warm presence that
cuddles up on your lap when you are tired or sad or in pain. At night when the
dementors come bursting through your sleep to turn the air in your lungs to
ice, you reach down to the bottom of the bed where she used to lie and feel for
the warmth that would melt the ice and slow the fearful beating of your heart.
But the space is empty.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-size: large;"><br /></span></div>
<br />
<div class="MsoNormal">
<span style="font-size: large;">You are alone. </span><o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com6tag:blogger.com,1999:blog-674011447723891296.post-22191062377722151822015-05-26T16:48:00.000-06:002015-05-26T16:48:37.014-06:00My life on Xeloda<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The first cycle of Xeloda went swimmingly insofar as I experienced few
side effects. However, I did not think it was working. I still felt like I was
drowning. The fluid pushing against my heart wall would wake me at night as I
struggled awake, gasping for breath. So I asked for more. And I got it.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The first week of cycle 2 was fine. Day 6, I went for my usual 5-mile
run/walk (more walking than running now as I was so short of breath) and came
back with a 2-inch diameter blister on my right foot, around the toe area. That
area was easily bandaged so I went for another 5 miles on Sunday. This time, I
was not so lucky. The ball of my left foot turned into a giant blister. So I
bandaged that and yes, went out again on Monday. I can see you shaking your
head. As I read this, I am shaking my head. Now both feet turned purple and I
could not get a shoe on and this was a problem. I was planning to present a
paper at a conference in New York and presenting it in slippers is not an
option so I called the doctor. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I had to take a break from the Xeloda for the rest of the 2-week cycle.
<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">New York was a blast. I attended the conference, saw my son, ate
wonderful food and went to a Broadway show, Something Rotten. I also walked
some more blisters into my feet. Bandages and Band-Aids are my friends. I got
back on Sunday night so that I could run/walk a 10k on Monday. The nurse had
told me I could not race it so I decided to interpret that literally and just
take it at a walk/ run pace. I didn’t race it exactly. However, now I really
have little skin left on my feet. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Why is treatment for breast cancer still so primitive? There’s an old
Bing Crosby song called, <i>Brother, Can You Spare A Dime?</i> Every time I am reminded
that I am drowning in this breast cancer tidal wave, I wonder who will spare,
not a dime, but a line attached to a life preserver. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">In 2012, 521,900 people died of breast cancer. That is 1,430 people
every single day and every year that toll rises. When 1,500 people died in the
Titanic disaster, laws were changed so that a shipping disaster of that
magnitude could be prevented from happening again. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">In 2011, Susan G Komen allocated only 15% of its funds to research for
breast cancer. That 15% includes all research, not only research into the
biology of cancer and treatment. There is no Race for the Cure. What would be
the purpose of a giant organization grounded in ending breast cancer if breast
cancer actually just ended? <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Almost all breast cancer research is aimed at preventing it returning
and for all the progress that has been made, it is like holding up your hand
and telling the tide to not come in. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When people talk of progress, they are inclined to talk in anecdotes. I
am alive because… stories. However, some facts to bear in mind are:<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">1975: The 5-year survival rate for breast cancer was 75.2%<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Now: The 5-year survival rate is 89.2%, but 83% at 10 years
and 78% at 15 years which is not statistically different from the 5-year
survival rate in 1975, especially if one considers the over-diagnosis and
over-treatment now. For African American women, the 5-year survival rate now is
only 79%.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">In 1975: 30% of patients were diagnosed at Stage III or IV. Staging
was not accurate so more women may have been Stage IV at diagnosis. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Now: 13% of patients are diagnosed at Stage III or IV. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The 5-year survival rate for Stage III is now 72% and the
5-year survival rate for Stage IV is now 22%. Both these are lower and far
lower than the survival rates of 1975.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">As long as survival rates are measured by being alive after 5 years, we
will never know if early detection means that we are living longer knowing we
have breast cancer or actually living longer.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">When women like Sheryl Sandberg (in her book <i>Lean In</i>) write things like her grandmother beat cancer, they
reinforce stereotypes that beating cancer is a matter of personal choice. They
ignore the desperate need for research to cure breast cancer for those who are
initially diagnosed with terminal breast cancer and the 30% who will see the
cancer return and become terminal no matter what they do.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">No wonder treatment is still so primitive. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Buddy, can you spare a line to save us?</span><o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com3tag:blogger.com,1999:blog-674011447723891296.post-31314125547032851082015-05-09T12:12:00.003-06:002015-05-09T12:26:24.369-06:00The TSA and breast cancer <div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> I spent a
hectic weekend in Seattle, seeing the sights with my husband and daughter. All
the time, I wondered if this would be the last time. As with many women at this
stage, I do not look sick and I try my damndest to not act sick. This is
especially important when flying. I have about as much chance (or less) of
having a medical emergency on board an airplane as the next person but I have
not forgotten this incident and its warning to not look sick </span><a href="http://time.com/3813516/elizabeth-sedway-alaska-airlines-cancer-kick-off-flight/" style="font-family: Arial, Helvetica, sans-serif; font-size: large;">http://time.com/3813516/elizabeth-sedway-alaska-airlines-cancer-kick-off-flight/</a></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">It seems, however, that terminally ill patients have a hidden homing
beacon that is picked up by officials at airports with the very specific agenda
of making your travel even more miserable. Intellectually, I know that anyone
can be singled out but when we are balancing our disease and a normal life,
being singled out feels catastrophic. Airport screening after breast surgery is
a tale from Hell. Have you noticed that breast cancer organizations have not
stepped up to help here? To circumnavigate this problem and enable me to pass
through security without being treated like a drug dealer, I ponied up the $,
did the background check and got a Trusted Traveler card. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I have sometimes had to have extra screening for explosive residue on
my hands etc. That, in and of itself, is a little disturbing. I mean, are they
saying that their detailed background checks are not reliable? I’d have a bit
more confidence if it wasn’t for articles like <a href="http://abcn.ws/1Ks0Af7">http://abcn.ws/1Ks0Af7</a>
and <a href="http://bit.ly/1EVV1o8">http://bit.ly/1EVV1o8</a>. However, TSA, knock
yourself out. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Seattle airport (seatac), however, decided I needed extra special screening
with the full body scanner. Well, yes that is not going to happen after my
breast cancer surgery left me unable to raise my arm above my head. Now, I
bought myself a grope (er, pat down).<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
</div>
<ul>
<li><b style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Off with your shoes and put them through the scanner.</b></li>
<li><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>Don’t touch your luggage.</b> Translation: You are not allowed to retrieve
any documentation</span></li>
<li><b style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Would you like a private screening?</b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> No thank you. I need witnesses.</span></li>
<li><b style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Anything hurt or sensitive? </b><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">How do you answer that question when you
have metastases in your spine, hips, pleural cavity and liver?</span></li>
</ul>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I call over the supervisor and ask if this is really necessary. I have
already passed a background check, walked through a metal detector, fly about
twice a month, and had nothing in my luggage to cause alarm.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">She assured me it was. I was selected at random. Meltdown time. The
poor screener doing the pat down was now also trying not to cry with me. She
kept apologizing. I honestly think she was too terrified to touch me in case I
broke. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I complained of course. I got a form letter back saying (in essence) that they can do what they like.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I actually feel less safe knowing the TSA is wasting resources to protect
the skies by groping triple-checked, chemo-toting one-breasted women. </span><o:p></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com1tag:blogger.com,1999:blog-674011447723891296.post-59773933422878331082015-05-09T12:07:00.001-06:002015-05-09T12:17:09.471-06:00Breaking the fragile shells we build to protect ourselves<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<o:p> </o:p><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">“Nobody knows the trouble I've seen</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Nobody knows my sorrow” Spiritual<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I listen to the Louis Armstrong version of this spiritual often. It
soothes the troubled soul at the especially trying times at night, at hospital
visits and at airports.<o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">At night, I have this recurring nightmare that a grate is pushing down
on my chest and I’m struggling to breathe. I wake up gasping for air. My heart
is racing. I have to sit up until my breathing and heart rate is somewhere near normal
again. The fluid pushing against my heart wall is not actually dangerous, it is
just uncomfortable. I can’t breathe if I lie on my right side and I feel short
of breath when I run. Of course, I cough when I lean forward. <o:p></o:p></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I have completed one cycle of Xeloda but don't think it's working so I asked to increase the dose. I'm now at the maximum. I'll deal with the side effects, just help me get enough air.</span></div>
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<br /></div>
<br />
<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">There is a bit of an imposter in all of us. We say we are fine when we
are not because that is the convention. I pretend to myself and others that my
life is normal, but the shell I surround myself with is incredibly fragile. It shatters
regularly at hospital visits because this is where I hear the bad news, fight
to get my chemo and am crushed by the suffering of others. </span><o:p></o:p><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">My fragile shell is sometimes shattered when I try to live life furiously. The conflict rages on between living life furiously and just living life. I have the endless battle of the spirit is willing but the body is not able.</span></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com2tag:blogger.com,1999:blog-674011447723891296.post-65439182806995630092015-04-27T17:53:00.000-06:002015-04-27T17:53:03.870-06:00The Circle of Life<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">April brings spring and new beginnings. The daffodils and snowdrops are flowering. It is the time of the year when I was born. It also now signals to me that I may have had my last good year. My oncologist has started to talk about months rather than years left. My circle of life is closing too quickly. <br /><br />Those of you who follow me on Twitter will know that I washed out of the Vaccine trial. My scan at 12 weeks showed a small amount of progression in my liver. My bones were quite stable and have been for the last two scans but it’s my liver that has my oncologist jumping up and down. It was not as though the immunization did not work, it just did not work well enough. So now I am on chemo. I have started taking 1000mg of Xeloda twice a day for two weeks and then one week off. I tried to get on a clinical trial with it, but I did not qualify. My C-Reactive Protein was not high enough. <br /><br />I was diagnosed with infiltrating ductal breast cancer, Stage III, 10 years ago. Almost exactly eight years later, I was diagnosed with Stage IV, terminal cancer. The median survival with Stage IV is three years. I have had two.<br /><br />After my first diagnosis, I kept asking why. I was not feeling sorry for myself but looking for reasons. I opened up cupboards and emptied them into garbage cans. Everything had to go. I replaced everything from pots to hand lotions. I was on a mad mission to eradicate every imaginable carcinogen and I did not stop until my imagination was exhausted. <br /><br />After my purge, I bargained and begged. My daughter was only 13. I needed another five years. I needed to live until she was 18. The oncologist made no promises but I did. I promised to do everything I could to say alive. <br /><br />I had chemo and vomited for six straight hours. Night after night, I lay huddled on the bathroom floor, too sick and exhausted to go back to bed. In the mornings, I dragged myself up to see to my family and exercise when I thought I could not move. But without fail, I presented myself at the infusion center two weeks later to be pounded into the submission of the bathroom floor. I lost my hair and my dignity. I developed allergies to dairy and anti-cholinergics so Benadryl sent me to the emergency room. I went from surgery to chemo to radiation to drugs that control estrogen. Whatever was thrown at me, I had to suck it up. The cost was the cost. <br /><br />My daughter turned 18, then 19, 20, and 21. I dared to wish for more. I was there when my children graduated from college. Could I make it to their weddings? I was hopeful. But it was not to be. Finally my Faustian bargain expired. It was time to pay the piper. </span><div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br /></span></div>
<div>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Unless there is something that works for me soon, I will never be the mother-of-the-bride (or groom) and I will never hold a grandchild.<br /><br />What do you do when you have been told the chips are down and this is your last hand? How do you play it? Do you try to live as you always have or cram the end with a dizzying pile of activities and memories for those you love? Each day we have to balance our energy and health with things to be done. Each day is a set of priorities that can change in a moment. Some days I get most things done but other times I fall dismally short. <br /><br />I can’t take things for granted any more. Opening the freezer and pulling out the frozen corn causes me to unleash a string of expletives that gets my husband running and waving his arms shouting, “I’ll get it! I’ll get it” as frozen vegetables hit the floor and I hop around holding my burning hands. Damn chemo.<br /><br />When I die, I will be missed by some but my death will largely be unreported. I did not do anything great and my name will not be in any history books. I’m an ordinary person. I am dying because of the lack of research to find a cure. <br /><br />I leave three requests: <br /><br />1) Take care of my family <br />2) Don’t ever donate to Susan G Komen or buy anything pink in my name and <br />3) Just say I died or became late. I did not lose a battle. </span></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com7tag:blogger.com,1999:blog-674011447723891296.post-68536081909073371782015-04-23T18:30:00.000-06:002015-04-23T20:19:37.998-06:00Living Beyond Breast Cancer convention for women living with metastatic breast cancer <div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><b>The long brutally honest version from my perspective. </b></span></h3>
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;"> We met in Philly for the Living Beyond Breast Cancer convention for women living with metastatic breast cancer on April 11 and 12. For me, it was a tweetup to meet the women who have helped me navigate my emotions as I deal with this disease every day. I did not really expect to get much out of the sessions. Some were helpful and some less so. I sometimes thought that some people giving those talks really did not have a clue. However, I do want to emphasize that this is just my take on the proceedings. I could easily have misinterpreted things as I filtered it through my own experience.</span></span></div>
<span style="font-size: large;"><br /></span>
<h4>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> Friday evening:</span></h4>
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;">Reception and welcome. I didn’t know a soul so I registered and ate my fruit salad and went back to the hotel. I was not up to discussing my diagnosis which seemed to be the topic of numerous conversations.</span> <span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span><br />
<h4>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Saturday morning: </span></h4>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Breakfast and meet up with friends. Things immediately started looking up.<br /><br /><b>Keynote: Promising New Pathways in Treating Metastatic Breast Cancer . Minetta C. Liu, MD</b><br /><br />I thought this talk was somewhat useful, but it was too specific. I really was only interested in my kind of cancer. I didn’t find out a whole lot of new information that my oncologist had not already shared with me. I found it depressing when she talked about treatments coming down the pike that we had already missed out on and would not be available for us. She talked about how each subsequent line of treatment has a reduced response rate. She discussed some specific drugs. She briefly talked about the role of immunotherapy and the measles vaccine as new areas of research. <br /><br /><b>Break out session One:</b><br /><br /><b>Don Dizon, MD, FACP Managing Symptoms and Side Effects: Pain, Fatigue and Insomnia </b><br />This was one of the highlights for me. I have enjoyed his common sense approach on Twitter and I enjoyed his talk even more. He had a lot of good advice but of course, also said scary stuff. <br /><br /><b>Pain</b><br />He discussed the control of pain and the escalation of drugs to control pain, limit disability and maximize autonomy. He talked about treatment of neuropathic pain (anti-depressants) and inflammatory pain (corticosteroids) as well as the usefulness of drugs such as Xgeva in controlling pain due to bone metastases. He talked about the difference between acute and chronic pain and non-drug treatments such as acupuncture (maybe), massage (increases well-being), exercise (good in every way) and hypnotherapy (no evidence).<br /><br />He had some good advice for when to make sure you take it and your analgesia is not working. Take it when the pain interferes with the activities of daily living. Balance the side effects with the effectiveness and it’s very important to take the drugs as prescribed. Important in dealing with pain is quality of life issues. Metastases can cause serious issues such as bleeding, cord compression and fractures. Radiation therapy treats pain for many patients but comes with a different set of problems. <br /><br />When describing pain to your health care provider/s, be prepared to describe:</span><br />
<ul><span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">
<li>Character of the pain – stabbing, throbbing, aching etc.</li>
<li>Location – where the pain is and what activities seem to bring it on</li>
<li>Duration- how long it lasts</li>
<li>Exacerbation – things that seem to make it worse</li>
<li>Remitting factors – things that seem to make it better</li>
<li>Associated symptoms – such as numbness and tingling</li>
<li>Severity – how bad the pain is.</li>
</span></ul>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">
Bottom line is that no person with cancer should suffer.<br /><br /><b>Fatigue</b><br />Fatigue affects approximately 60% of cancer patients and can be debilitating but it can also be reversible. First look for obvious causes such as anemia or insomnia. Procrit and RBC stimulating drugs are a last resort. A psychostimulant (e.g., anti-depressant or ADHD drug) may be effective. Fatigue is a problem when it interferes with daily activities and causes distress. <br /><br /><b>Insomnia</b><br />Insomnia can be primary (difficulty getting to sleep) or secondary (waking in the night). Causes can by physical and/or psychological or even environmental (e.g., too hot or cold or light or that dog sleeping on your bed) issues. It can be the side effect of medication such as dexamethasone or a sign of disease progression. <br /><br />Insomnia can and should be treated when it is problematic. Cognitive behavioral therapy is one option. You learn to quiet the distractions and stop intrusive thoughts and relax. Physical exercise is important as well as establishing a familiar bed-time routine. Make sure you do get out of the house often. If you can’t sleep get up and do something. <br /><br />There are also medication options. Melatonin is unregulated so can’t be recommended. Anti-depressants may help. Benzodiazepines are a short-term (1 – 2 weeks) solution.<br /><br /><b>Conclusion</b><br />When facing cancer, it’s all about you. <br /><br />Then Dr Dizon said something that no one I spoke to agreed with. He said that no matter how hard it is for us, it is more difficult for those watching us die. I can only think that his patients don’t really tell him what’s going on. My husband (a dear loving man) completely disagreed with this as well. It is hard for him to watch what I’m going through but he is only watching. He does not have the endless blood draws, the gastric problems, the scans and the visits. Everything he hears about my illness is filtered through me. He does not have to mourn a future he will not have. He gets to take a day off which I never do. <br /><br />About this, Dr Dizon was quite wrong. No matter how hard this is for anyone else, it is far harder for me.</span><br />
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<h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Breakout Session Two</span></h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">I went to: <b>Coping with the Financial Impact of Living with Metastatic Breast Cancer<br /> Joanna Fawzy Morales, Esq. </b><br /><br />This was probably not the best choice for me. It was an excellent talk but I still work full time, have insurance and can pay my bills and her advice was better suited to those who were facing a more brutal financial impact.<br /><br />She works for triagecancer.org which is a great resource and everyone who is impacted by employment and life changes from cancer can get information from there. She discussed our rights and responsibilities as cancer patients and what the new health care laws mean for us. She cautioned everyone to do the math before selecting a health care plan. We will most likely reach the out of pocket maximum every year so don’t try to save a few dollars on the monthly premiums. Decisions like that can be very expensive.<br /><br />She talked about Cobra (18 months on your current insurance) and who is eligible for SSDI (those who have paid in for 5 or more of the last 10 years). She warned us that 62% of bankruptcies occur for medical debt and 80% of those have health insurance. However, companies can no longer cancel your health insurance, and cannot impose lifetime or annual limits. They also have to cover the routine costs of clinical trials. Premiums can be adjusted for the number of people covered (individual/family), geography, age (to a limited extent) and tobacco use. However, you cannot be denied for a preexisting condition.<br /><br />She discussed disability insurance but of course for us, that was a moot point. <br /><br />There are a number of resources available to cancer patients that can be utilized. Never assume you do not qualify:<br />· IHSS – In home support services <br />· Disability waiver for bills<br />· Financial resources: pink fund, ACS, cancer care, giveforward, co-pay assistance, prescription drug, transport (ground and air), lodging, gas, parking and toll.<br />· Cleaning for a reason<br />· Food banks<br /><br />There are a number of webinars and cancerandcareers.org is holding a one-day conference on June 12, 2015</span><br />
<span style="font-size: large;"><br /></span><h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"> Saturday afternoon</span></h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">The only session at the conference that I felt personally offended by was the afternoon keynote: <b>Riding the Cancer Wave – Spirtually Speaking</b><br /><br />I gave it a try but the description already had me on edge. </span><br />
<span style="font-size: large;">"The journey through cancer is not unlike riding a wave—peaks, valleys, wipe outs and even sublime thrills. No wave is exactly like another. Each surfer has a unique style and way to navigate the wave and all its surprises. xxx, will explore the qualities he’s observed that help people ride the cancer wave with greater ease. He will also share what may happen when lifelong beliefs meet the challenge of cancer and discuss how it is that we tend to find meaning in the unlikeliest of places—including on the cancer wave.” </span><br />
<span style="font-size: large;"><br /></span>
<span style="font-size: large;"><span style="font-family: Arial, Helvetica, sans-serif;">It started off fine, but when he said that “everything happens for a reason,” I had to walk out. The implication that I did something to cause my cancer and early death is unforgivable. There</span><span style="font-family: Arial, Helvetica, sans-serif;"> is no reason. It happened. I didn’t stay for the rest but I heard from someone who was forced to stay (disability issues) that he even dropped the “cancer is a gift” bomb. I have no idea who invited him, but whoever did needs to be severely disciplined. This type of speech is totally unacceptable. </span></span><br />
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;"><br />I skipped the End of Day Remarks and went for a run. By then, I was as mad as hell and I needed to clear my head. Afterwards, a few of us went to dinner at a great Chinese restaurant. Enjoying a meal with friends always restores my soul. </span><br />
<h3>
<span style="font-family: Arial, Helvetica, sans-serif; font-size: large;">Sunday</span></h3>
<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: large;">I went for a run and skipped the breakfast. I also decided to let the first session go. I just don’t get why people think that when we are terminally ill we want to experience our touchy-feely side. I’m sure it helps some but to devote a whole morning to it seemed like someone was really not focusing on what we needed. Acupuncture, meditation, yoga and whatever simply don’t work as well as Ativan and at this point in my life, I will put my mental health in the pill bottle every time. Seriously, we have to get things done. I don’t have time for the other stuff that is not going to make me better. Let’s talk going for a 5-mile run while I listen to a biography of Genghis Khan. Now that I can get into. <br /><b><br />The final talk of the day was Increasing Wellness: Foods to Fortify and Boost Your Immune System</b><br /><br />I love nutrition and this talk did not disappoint. <br /><br />Highlights:<br /><br />· Probiotics are good bacteria. Found in fermented food such as kefir, yogurt, sauerkraut, kombucha and sourdough bread. Sourdough bread. Awesome. <br />· Fiber. Beans, oats.<br />· Good food: Artichokes, asparagus, bananas, vegetables (duh), nuts, fish, avocado, flax.<br />· Vitamins minerals and antioxidants<br />o A = yellow and orange foods and broccoli and spinach<br />o C = lots of fruits and vegetables – tomato <br />o D = sun, egg yolk , vegetable oils<br />o Zinc = nuts, whole grains, beans <br />o Selenium = plant foods<br />o Copper – leafy greens<br /><br />We don’t need a supplement unless we have a low level. If it is low for any nutrient, take a supplement to get to normal and then maintain it.<br /><br /><b>Sugar does not feed cancer but don’t eat junk more than twice a week. </b><br /><br /> Julie Lanford is on twitter @cancerdietician<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br /></span><br /> </span></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com2tag:blogger.com,1999:blog-674011447723891296.post-86043652304242668082015-03-20T10:49:00.000-06:002015-03-20T10:49:09.929-06:00About the numbers
<br />
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<span style="font-family: Calibri;">My statistics are from two sources: SEER (cancer.gov) and
from the top cancer journal, CA<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Misquotes:<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">We are living longer with breast cancer.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">I don’t see it. I see two things wrong with this statement.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo3; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The median age at diagnosis is 61 and the median
age at death is 68. Untreated breast cancer is estimated to take about three
years from diagnosis to death. That is, all that surgery, chemo and radiation
is adding four years from diagnosis to death to the median.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 8pt 0.5in; mso-list: l0 level1 lfo3; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Techniques for diagnosing breast cancer,
especially advanced breast cancer, have improved. Women are diagnosed earlier
but that does not mean that overall they are living longer. They are living
longer KNOWING they have breast cancer and that is not the same thing. For
example, I was diagnosed with metastatic breast cancer almost two years ago
because my tumor markers were rising. A scan confirmed the metastasis to the
hip. I had no pain and no symptoms.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l3 level1 lfo2; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The number of women dying from breast cancer in
the USA has not changed since 1970.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l4 level1 lfo4; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
number of women dying from breast cancer in the USA has increased since 1970.
In 1970 30,100 people died of breast cancer in the USA.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l4 level1 lfo4; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
number of people dying kept increasing every year until it stabilized in 1992
at about 46,000. The number was approximately 40,000 for 2014 and is expected
to be 40,730 for 2015. If this represents a rise in cases, please refer to the
above about knowing about it for longer.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l4 level1 lfo4; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">3.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
number of cases of breast cancer is over three times higher now than in 1970
(from 68,000 to an expected 234,190)<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 8pt 0.5in; mso-list: l4 level1 lfo4; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">4.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
incidence of breast cancer and the death rate declined the most from 1995 to
1998. Then the incidence started to rise again with a modest decline in death
rates from 1998 to 2011.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l3 level1 lfo2; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Breast cancer is rare in women under 50.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l1 level1 lfo5; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
most common cancer in women under 50 is breast cancer and women under 50 have a
1:53 chance of getting breast cancer.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 8pt 0.5in; mso-list: l1 level1 lfo5; text-align: justify; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";"> </span></span></span><!--[endif]--><span style="font-family: Calibri;">The
lifetime risk is 1:8.<o:p></o:p></span></div>
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<span style="font-family: Calibri;">XXX<o:p></o:p></span></div>
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<span style="font-family: Calibri;">Update on clinical trial: Vaccine For a Cure<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">I completed my loading dose of vaccines and antibody. I had
four injections of the vaccine ONT-10 each week for eight weeks. In addition,
I<span style="mso-spacerun: yes;"> </span>had three infusions of the antibody,
varlilumab, one every three weeks. Now I wait for my scans next month to see if
it worked. If it does, I go on a maintenance dose every six weeks.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">I feel great with no side effects. It is a wonderful break
from AIs and all the problems those bring. You know what those are! I have
managed to work and exercise normally and have a lot of energy. Sometimes I have so
much energy that I can’t get to sleep and I get up to code. Then I have
computer code chasing me all night. <o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">XXX<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">How<span style="mso-spacerun: yes;"> </span>does the early
death of a mother from breast cancer affect a family.<o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Have you ever wondered what the long-term effects are when a
young mother dies? This is the story of one family I know. The mother’s death
was like taking a hammer to a mirror and then watching the splinters scatter and
cut and scar. A husband and five children were left. </span><span style="font-family: Calibri;">The disease did not just take the mother. It took a family. <o:p></o:p></span></div>
<br />
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<span style="font-family: Calibri;">Six people were cast adrift. The anchor was gone. <o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">6 people moved in different directions, lost<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">5 marriages, 2 divorces<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">2 very unhappy marriages not divorced<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">4 with drug and/or alcohol<span style="mso-spacerun: yes;"> </span>problems<o:p></o:p></span></div>
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">2 drank themselves to death<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">1 became a philanderer <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">1 turned to promiscuity then prostitution <o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Another went to prison for embezzlement<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">1 went to college<o:p></o:p></span></div>
<br />
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<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">There was no proud mom at graduations<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">There was no mother-of-the bride<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">There was no grandma for the babies<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">There were no more family get-togethers<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">All struggled alone without a family safety net<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The ones that are left have not interacted for
decades<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 8pt 72.25pt; mso-add-space: auto; mso-list: l2 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">They were not nice to each other.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com0tag:blogger.com,1999:blog-674011447723891296.post-7234620286178810672015-03-07T11:06:00.000-07:002015-03-07T11:26:03.033-07:00Science and magic<span style="font-family: Calibri;">The mass of men lead lives of quiet desperation. Thoreau <o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="line-height: normal; margin: 0in 0in 8pt; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;">
<span lang="EN" style="mso-ansi-language: EN;"><span style="font-family: Calibri;">Any sufficiently
advanced technology is indistinguishable from magic. Clarke<o:p></o:p></span></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Update on my clinical trial<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m still on the vaccine clinical trial. I am enjoying this
period of no side effects, no symptoms and a relatively peaceful time. My life
is still very much constrained by Thursdays at the hospital for the injections
and infusions as well as trying to get work done. Fortunately, I have a
flexible schedule. Unfortunately, I seem to be working all the time. This week,
I had a sick dog and that ate into my spare time so I was quite stressed
because of course, a sick pet takes priority of just about everything else.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I am currently doing a few MOOCs as well and fell sadly
behind. Working on: </span><br />
<span style="font-family: Calibri;"><a href="https://www.futurelearn.com/courses/inside-cancer">Future Learn: Inside Cancer</a></span><br />
<span style="color: #0563c1; font-family: Calibri;"></span> </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">xxx<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Reading the highest rated (by impact factor) cancer journal.
Two articles of interest in breast cancer research. I’m just summarizing what I
read. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">From CA : A Cancer Journal for Clinicians<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Medical marijuana for cancer: The conclusion was that more
research is required. I followed the breast cancer references. My interest was
only in breast cancer so I skimmed the rest. <span style="mso-spacerun: yes;"> </span>Synthetic cannabinoids (component of marijuana
created in a lab) have been shown to have antitumor effects in breast cancer in
the lab and in mouse models. However, that was from early 2009 and the research
does not seem to have gone anywhere since then. One reason may be because other
research has shown that exposure to THC (the psychoactive component of
marijuana) inhibited anti-tumor immune responses in breast cancer in mice and
resulted in significant tumor growth and metastasis in some lines. (Comment: Something
else to bear in mind is that negative results are rarely published so if further
research showed nothing, we are unlikely to ever know.)<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The problem with the research at this point is that
marijuana is not standard and newer strains of the drug have higher THC to CBD
ratios as the emphasis is on the psychoactive component. The lab and mouse
studies are usually not compared to anything or only compared to a placebo, not
standard treatment. So far, for breast cancer, there is no credible evidence
that marijuana is better than standard treatment for tumor inhibition, appetite
enhancement in cachexia, pain management or anti-emetics in nausea and vomiting
from chemo. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Global cancer statistics 2012: Breast cancer was the most
frequently diagnosed cancer and leading cause of death worldwide in women and
the leading cause of death in women in less developed countries. There were an
estimated 1.7 million cases and 521,900 deaths. In the world, breast cancer forms
25% of all cancer cases and is the cause of 15% of all cancer deaths in women.
About half of all breast cancer occurs in more developed countries and cause
about 38% of the deaths from breast cancer. The only area of the world that had
a higher incidence of breast cancer than North America was Western Europe with
96/100,000. North America had 91.6/100,000. This figure was not broken down further
by type of breast cancer.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Superstition and science<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My childhood is the story of colonialism in Africa. I grew
up listening to the tales of magic and superstition from my nanny. My dreams
were vivid stories of ancestors and love and war. I ate mealiepap for
breakfast, umfino made with pumpkin leaves for lunch, and <span lang="EN" style="mso-ansi-language: EN;">Umngqusho </span>for dinner.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I understand superstition and my parents had deep respect
for the power of the sangoma (traditional healer). The sangoma is still
consulted by many even when conventional Western medicine is used. The sangoma
was also consulted to put a curse on someone or remove a curse, to heal a body
or spirit or find a cause for a broken one. I’ve known people to die because
they believed that a curse had been placed on them even when no xray or test
found anything wrong. I have also seen people die because they consulted a
sangoma instead of taking an antibiotic for pneumonia. I have seen the comfort
in crisis by the sangoma. When the sangoma threw the bones to tell the future, I
lived in fear of what the bones would tell.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">We had a family feud that went back four generations and
with many accusations about sangoma curses. Every time misfortune would befall
one side of the family or other, it was attributed to a curse. I still cannot
look at a devil thorn without thinking about the “other” side of the family
accusing my father of cursing their home with devil thorns. <span style="mso-spacerun: yes;"> </span>Of course I only heard one side of the story.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Superstition is more than curses. It often reflects a lack
of trust. I have heard young men say they refuse to wear a condom because it is
a plot to limit procreation, not to prevent the spread of HIV. We have read the
recent stories about ebola that illustrated the mistrust<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My experiences in Africa left me with a love of magical
things. (Don’t take me on in a Harry Potter quiz. You WILL go down.) However,
studying science has enabled me to put that part of my life in my fond memory
box.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Now, I will do things that my mother would never do. <span style="mso-spacerun: yes;"> </span>I will seat 13 at the table, walk under
ladders and break mirrors with abandon. It was a long road from running barefoot
in the mud in Africa, terrified of every superstition and tokoloshe (boogeyman
sent by the sangoma) to the world of running shoes and science and reason and
clear rules to live by. In one generation, with a lot of lucky breaks, my life and
the lives of my children were forever changed.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">In my rather insulated world of science, we scoff at superstition
and quackery and I have a knee-jerk angry response to quacks. If people want to
pursue alternative treatments, there is no law against it. However, it may not
be harmless. If people make claims about it that are not true or screw up a
treatment by doing things on the side without telling their doctors then others
might die. They raise their children with a mistrust of science. The US is now
near the bottom of the developed world in terms of science literacy. Shame on
us. So many of these quack claims are not even possible and reading a basic
biology text would show them to be impossible. It is unfortunately unlikely
that those who believe them would read a basic biology text. I want to
emphasize that I am not talking about a handful of vitamin pills that your doctor
laughs at and that end up being flushed through your urine. The few dollars
spent probably don’t do more than minimal harm. I’m definitely not talking
about your weekly or daily yoga or meditation class. I’m talking about serious
and expensive cons that unscrupulous people use to part desperate people from
their children’s college fund. Vitamin supplements are for another day, as are
reiki, energy healers and other quack cures. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Science does not always get it right and I’m a huge skeptic
of any evidence that is gleaned through self-report. I know enough about human
behavior and memory to know that we don’t do what we say we do and we
definitely don’t remember what we did. However, when I blast another quack cure
and I get a stream of correspondence, I am alarmed that people try to persuade
me by offering superstition. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpFirst" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">1.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Anecdotes are not evidence. Testimonials are
powerful persuasions but they are rubbish. Even if true (doubtful), it’s one
person’s experience. Please don’t tell me that it worked for you is the only
evidence that it works.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">2.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Who wrote the article? The source of the claim
is what gives it credibility. I’m often sent articles written by people who are
making the preposterous claim. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">3.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Quick check: Is the article from a credible journal?
What is the impact factor? <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">4.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Second check: Did you look for credible evidence
that it was not true?<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">5.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Newspapers sometimes offer accurate information
but often it is best to remember that they are in the business of selling news
and a perfectly accurate report may not be as sellable as one with selected highlights
and exaggerations.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">6.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">The supplement industry is a multi-billion (that
is not a typo) dollar industry. No one is getting poor on your supplements. Oh,
except for you, that is.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">7.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Computer models of disease and treatment are of
limited use.<o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpMiddle" style="margin: 0in 0in 0pt 0.5in; mso-list: l0 level1 lfo1; text-indent: -0.25in;">
<!--[if !supportLists]--><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="mso-list: Ignore;"><span style="font-family: Calibri;">8.</span><span style="font-size-adjust: none; font-stretch: normal; font: 7pt/normal "Times New Roman";">
</span></span></span><!--[endif]--><span style="font-family: Calibri;">Cures in the lab (in vitro) or in mouse models often
don’t go anywhere. An estimated 95% of drugs never make it to treatment.
Because something works in a petri dish does not mean it is an effective or
even safe treatment. A whole lot of chemicals kill cancer cells in the lab. Fewer
make it past mouse models and even fewer past clinical trials. <o:p></o:p></span></div>
<br />
<div class="MsoListParagraphCxSpLast" style="margin: 0in 0in 8pt 0.5in;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I know what it is like to be desperate. I cling to the hope
that a cure will come before I die. However, I have watched women spend every
last cent on looking for a miracle and dying broke and with heart-wrenching
regret that they wasted their last good years instead of living in the joy of
experience. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My plea would be to donate those dollars to find a cure. Please
donate directly to research. It is our only hope. There are many options. I
like this one because they do research on<a href="http://www.cufund.org/giving-opportunities/fund-description/?id=3496"> breast cancer in young women.</a></span><br />
<span style="font-family: Calibri;"></span> </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com2tag:blogger.com,1999:blog-674011447723891296.post-33661652181526458592015-02-27T16:32:00.001-07:002015-02-27T16:32:40.243-07:00About the study Vaccine For A Cure
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p><span style="font-family: Calibri;">The vaccine is ONT-10 and it is given in combination with
varlilumab. Varlilumab (does that sound like a type of yoga pants) is an antibody.
The goal is that combination of the two drugs will activate my immune system to
fight the cancer. The combination of the two drugs is a new phase 1b study and
so far the dose and side effects have not been established. It is an open label
study (i.e., I get the drugs that they say I get). There are no placebos or
experimental manipulations except for the dosage. We all get the same great
deal.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Three days before the start of the study:<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Again I reported to the infusion center and this time there
was no problem. I had an infusion of a small dose of Cytoxan (cyclophosphamide)
to jumpstart the immune system response. It was not like serious chemo at all.
I had a bit of nausea but nothing my regular anti-nausea drugs could not take
care of. I had no loss of hair or anything drastic. It was given with a premed
of Kytril and I drove myself home without a problem.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Three days later I was back at the hospital for day 1 of the
trial. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Day 1<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I saw the nurse practioner who checked me over and made sure
that I was still exercising and eating properly.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I had 4 subcutaneous (under the skin) injections of the
vaccine ONT-10 in the abdomen and legs and then vitals checked to make sure I
did not have a reaction. My drug reactions are legendary (not a good thing) so
a clean bill of health was a huge relief. I then trotted off down to the infusion
center to get my varlilumab. The nurse came to do the infusion and I noticed
she was wearing chemo gear. She laughed and said that she was just checking to
see if I was paying attention because of course I was not getting chemo.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Except for the three tries for a vein, everything went
smoothly enough. I had the infusion over 90 minutes and then had to have blood
drawn from a different vein (two more sticks) for a pk (pharmacokinetics; how
much of the drug is in my body). I was fine and drove myself home. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Day 8 and 15<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">For the next two weeks, I went and got my ONT-10 injections
and then home. Still no side effects at all.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Day 22<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The ONT-10 injections happened as usual. After that it was a
trip to the infusion center for another dose of varlilumab. This was the same
as Day 1. The infusion over 90 minutes and then a pk. Again, there was no need of
a premed and no reaction. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Day 29 <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This was a fun (not) visit. It started off with 18 tubes of
blood being drawn. Fortunately, the phlebotomist knew a thing or two and it
only took one stick. After that, it was plain sailing. I had the four
injections and went home. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I’m half way through the dose loading phase. I really hope
it is working. I'm living a normal life. I have no pain and no side effects. I work 40 or more hours a week, exercise two hours a day, bake bread four times a week, read and do all the things wives, mothers and friends do. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><o:p></o:p></span> </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com1tag:blogger.com,1999:blog-674011447723891296.post-11910815767546711992015-02-27T15:08:00.001-07:002015-02-27T15:08:26.681-07:00Starting a new trial
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">My clinical trial with MLNo128 finally ended on December 23
with the scans showing disease progression. It was one of those drugs that was
too toxic for me at the full dose but not effective enough at a reduced dose. I
still have residual side effects even though I have been off the drug for over two
months. My nails are still dry and brittle, my tummy trouble is not fully
resolved and I itch all over, all night. My back looks like I have a serious
case of the kinkies the way I have scratched myself. However, I had a good run
in the world of clinical trials and metastases. I was on the drug for 32 weeks
before progression and I still exercised for two hours a day, ate my vegan
diet, slept as poorly as usual, did chores, watched movies, worked full time, learned
something new every day (I am addicted to MOOCs) and was a mother and wife and
friend. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I spent a few days in Florida at Islands of Adventure and
Universal in Orlando and staying with dear friends on the beach. I went for
long walks and ate great food and put my illness in a little box in the back of
my mind for a little while. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The problem with clinical trials is there is no wiggle room.
A scan scheduled just before holidays means exactly that. There is no
postponing to a less-stressful week later and this scan day was a day that one
wishes did not exist. Although I hadn’t had any pain, I had some feeling
of things weren’t quite normal. Normal of course is a moving target when you
have cancer and half of you hopes that this is just a different normal, but the
sensible half of you knows that the results of the scan are not going to go
your way. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>I had a complete
melt-down at the doctor but had pulled up my big girl pants by the time I got
home and cheerfully celebrated the holidays with my family, reserving tears and
fears for the loneliest small hours of the night. We ate good food and played
games and I took my usual thousands of photos while the washout period of four
weeks began. It’s very scary to be told that all treatment will stop for four
weeks before you can join the next clinical trial. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">First stop was a liver biopsy. That was relatively painless
and I arranged to donate tissue for research at the same time. Then came the
blood work. They had to take so much blood that it had to be done on two different
days. The first visit was 12 tubes of blood and a few days later I went back
for another 16 tubes, an EKG and urinalysis. I was finally ready to have the
infusion. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I got to the infusion center on the appointed day, exactly
four weeks after my scan and the research coordinator caught me before I went
in. I could not start the trial because my white blood cell count was too low.
This has been an endless problem since I had my first round of chemo a decade
ago. I was devastated. Not only did it mean I missed the start of the trial but
now I had to have the scans repeated because I had missed the four week cut-off
since my last scans. So I duly went and had more scans and breathed through the associated anxiety.
As you can imagine, four weeks without treatment meant that my scans were not
pretty. However, I swallowed hard and prepared myself for the new trial.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">First step was I had to get my WBC count up. I did the right
things and did what I was told. As insurance, I ran up 48 flights of stairs
before my blood was drawn for a WBC count. Ha. The count was higher than it has
been in a decade. Now it was way up and I could begin. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com0tag:blogger.com,1999:blog-674011447723891296.post-9504042921126598772015-02-13T18:04:00.002-07:002015-02-13T18:13:48.549-07:00It's been a while
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Clinical trial MLN0128<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">This update was really difficult to write but it turned out
for the best because I ended this trial at exactly the right time to start the
immunotherapy one. More on that later. This update is from the last blog to
early December when things started to go wrong for me and MLN0128. To tell the
truth, things had been going wrong for some time but this was an escalation of
disaster. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">When people talk about the roller coaster of stage IV, I don’t
see it like that. I get the metaphor of the highs and lows but there is no
thrill in the rapid decline that precedes the low. I think of it as more like a
tsunami that has endless waves that keep pulling you deeper and deeper into
destruction and with it are the homes and lives of loved ones destroyed by the
pain of losing a mother or daughter or sister. I think this is hardest for the
mothers who lose their daughters and are helpless to protect them from the onslaught.
<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The clinical trial required monthly visits to see the doctor
or nurse practitioner and these events were always ones I would really rather
miss. Every time I see the appointment reminder on my phone there is a big red
“Cancel Appointment” button that I long to click. But I never clicked it and I
went every four weeks as required by the clinical trial and would hand back the
four pills (carefully counted by the pharmacist) and collect another 30-day
supply of 60 pills. I also had a sheet with the exact times I took the pills
every day and the glucometer with the readings of the twice-weekly finger prick
results. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">At my November visit, my drugs were delayed. Apparently, my
liver enzymes were elevated. There were a bad few moments. My immediate thought
was that liver metastases had progressed to a dangerous level, but the NP
reassured me that it was probably “just” a side effect of the drug. An abnormal
blood result is a huge palaver. Everything has to be checked against the
protocol. It turned out the results were only a level 2 elevation so I was good
to go with another month of drugs but needed to have blood drawn in two weeks
to check. I am not sure but I think the fact that I had been trying to put some
weight back on and consuming about 3000 calories a day might have had something
to do with it. I decided to cut down on the 85% dark chocolate.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The doctor visits consume a huge chunk of the day. I had to
fast (water only) before the blood draws and that is tough as only a caffeine
addict would know.<span style="mso-spacerun: yes;"> </span>I always think I
should have a flashing light on my car to warn people when I haven’t had my
caffeine. I have to leave an hour before the appointments to get there in time and
have started to make a flask of green tea for these long days while I wait for
the results of blood tests. On this cold November day, I felt like a
construction worker sitting in the waiting room and drinking from a thermos
cup, huddled in my polar bear hat. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">While I was waiting, I talked to another patient who had to
come back to get her prescription changed for her opioids because the
prescription was for one month and it had only been four weeks since she had
picked up her last prescription. She has Stage IV and is in constant pain. I
just don’t understand the need for all this bureaucracy. Doctors constantly offer
me Ativan and I decline. I never refill my prescription. I just ask for a new
one about every 9 months or so, but ¼ of .5mg really works well for mild nausea.
<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">While we were waiting, she told me her very sad story. Her
husband was killed in a car crash seven years ago and she still felt her life
was bereft of meaning. She and her husband were stopped at a stop street and
the oncoming car with bald tires skidded on the icy road right into them. Her
husband was killed instantly and she required hospitalization and surgeries.
The driver of the car was in the country illegally and had no driver’s license
or insurance. He was unhurt.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I went home exhausted and emotionally spent that day but
ready to enjoy Thanksgiving break with two of my children who managed to make
it home. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I watched one play video games. He has a wonderful way with
words and amuses us immensely. He is also very sociable and goes out most
evenings. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The other son is more serious. He has a wide general knowledge
and it’s fun to ask him about things as you think of them. His ambition is to
read the whole of Wikipedia but of course he can’t. He has still made huge
inroads and read more than most with a deep understanding. He has an undergraduate
science degree and a graduate computer science degree and is rapidly rising in
the ranks at Google.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Whenever we have children home we like to go out and eat. I
have a few favorites. I don’t make a big deal of whatever is available but some
restaurants have nothing that I can eat. A clue is if you see the words deep
fried at the top of the menu. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><span style="mso-spacerun: yes;"> </span>We love to sit in the
hot tub in the evenings and just talk. It’s a communal time where everyone shares
what they did and what they hope for. The boys have a beer and conversation is
animated. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">The days go so quickly now.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">On Thanksgiving Day we went for a 5k run. There were over
8000 people there and it was chaotic. I don’t understand why it is so popular
when it is so badly organized. It was thoroughly miserable and definitely tops
my worse run experience ever and I have been on some pretty bad ones. It took
45 minutes to actually get to the start because they had no system. The sponsors
were United Way which makes me think that if they can’t organize a simple 5k
run then what can they organize? They are not on my current list of charities
anyway but now they never will be. The highlight was getting home to soak in
the hot tub for 20 minutes before I started cooking.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I did go back to have blood checked again two weeks later
and everything was back to normal. And so the tide turns and takes a short
break before the next wave hits.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com1tag:blogger.com,1999:blog-674011447723891296.post-69653567195280091802014-11-23T15:59:00.002-07:002014-11-23T15:59:56.957-07:00Metaphor in Lord of the Rings
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Update on clinical trial MLN0128<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Cycle 7, week 4<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I have been in the clinical trial for almost 8 months. I
still feel fine with no new symptoms but my next scans are still just over 4 weeks
away. The most bothersome side effect is the itching. I have a fine rash over
most of my torso and it itches terribly at times. It is far worse than when I
was on the 5 mg so I’m wondering if it has something to do with 4 mg being in
the form of two capsules and 5 mg in the form of one capsule. I have a bit of
diarrhea when I wake in the mornings but it is not like before. I also have occasional
nausea. However, now that I take the drug at night, I take an Ativan and that
sends me to sleep and I sleep through the nausea. <span style="mso-spacerun: yes;"> </span>The mouth ulcers come and go as before. I
still run for an average of 30 minutes a day and walk 50 – 60 miles a week. I
still work and bake bread and record my life in photographs and video. I haven’t
done any traveling in the last four weeks. I came back from NYC<span style="mso-spacerun: yes;"> </span>with a terrible cold and it took weeks to recover.
<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Metaphor in Lord of the Rings.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="color: #333333; font-family: "Arial",sans-serif; font-size: 10pt; line-height: 107%;"><br />
<i>Frodo</i><i style="mso-bidi-font-style: normal;">: I wish none of this had
happened. <br />
<span style="mso-bidi-font-style: italic;">Gandalf</span>: So do all who live to
see such times. But that is not for them to decide. All we have to decide is
what to do with the time that is given to us. </i></span><i style="mso-bidi-font-style: normal;"><o:p></o:p></i></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">As the weather turns colder, I am stuck exercising on the
treadmill more and more. The treadmill is nicely placed in front of our large
screen TV so this is an opportunity to revisit my favorite movies. Currently,
I’m working my way through the LOTR trilogy for the many-ith time. At the end
of Fellowship and the beginning off Two Towers is the battle of Gandalf and the
Balrog, Durin’s Bane. As I watched it again, I was struck by the metaphor of
cancer as Gandalf the Grey fought the Balrog. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Now, I have never liked the metaphor of cancer as a battle
or fight. A battle implies that you have a chance of winning if you fight
strategically. What we know, or more accurately, don’t know about cancer makes
winning or losing arbitrary. My response to people who think they will win against
cancer is, “Maybe you will and maybe you won’t.” You do not defeat cancer by
force of will.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">At the Bridge of Khazad-dum, Gandalf turned and faced the
Balrog and refused to let it pass so that the others could escape. Gandalf
broke the bridge and the Balrog fell. Gandalf then turned away from the Balrog
and the falling bridge to flee with the others who were escaping. However, as
the Balrog fell, it wrapped its whip around Gandalf’s legs and dragged him into
the abyss. The two continued their battle until Gandalf killed the Balrog.
However, the cost was the life of Gandalf the Grey. Gandalf returned briefly as
Gandalf the White to complete his tasks.<o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">As we face the diagnosis of cancer we turn and fight. We bear
the beatings of surgery, radiation and chemo. Then finally we are done. We are
exhausted and wounded and battle weary, but hopeful that is all we have to
endure. We turn to flee back to our old lives. But we are suspended there at
the end of the crumbling bridge in a timeless void. We have no idea if the whip
of cancer will catch us again and pull us down into the abyss to continue the
battle, knowing that if it does we must die. We can fight and take the lashes
for a while and use the time to finish our quests but this will be our final
battle. We will find incredible strength at times, but the old wounds will
haunt us and eventually we have to confront the end. The Balrog dies when we
die. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<o:p><span style="font-family: Calibri;"> </span></o:p></div>
Anonymoushttp://www.blogger.com/profile/15159836946829912961noreply@blogger.com0tag:blogger.com,1999:blog-674011447723891296.post-72013512423666201722014-10-26T23:21:00.000-06:002014-10-26T23:21:23.801-06:00Update clinical trial MLN0128
<span style="font-family: Calibri;">Cycle 7, week 4<o:p></o:p></span><br />
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Amazingly, I have been on this clinical trial for almost
seven months. During that time, I have had three scans. The first scan after
two months showed dramatic improvement, the second after four months showed
stability and the third after six months again showed dramatic improvement. Of
course, I don’t have information on how others are doing, but I’m told that my
response has been outstanding. As researchers and biotech companies try to
unlock the secrets of why some do very well, some stay stable and some just don’t
respond at all to the new drugs, I am fortunate to be part of this and I don’t
take the science or the luck for granted. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">There have been definite ups and downs. The first three
months were relatively easy. My biggest challenge was facing down the mouth
ulcers that covered the inside of my mouth, too many to count. Valtrex<span style="mso-spacerun: yes;"> </span>(a drug I have taken for cold sores) and capsaicin
(the chemical that gives hot peppers their burn), got me through that stage. I
found the best way to numb my mouth was to rinse it with very hot salsa so that
the capsaicin made every nerve ending scream while I white-knuckled the edge of
the sink and let the pain wash over me. The nausea and occasional vomiting were
controlled with hefty prescription drugs. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">At about the three-month point, I started getting diarrhea.
This put a definite damper on my enthusiasm for the drug. At first, the
diarrhea was controlled with regular four-hourly doses of Tincture of Opium.
Despite the romantic-sounding name, it is the worst tasting medicine you can
imagine and has none of the good effects. I kept taking it every four hours so
that I could go to work, run, eat, and live. Gradually, however, I would have
to plan my day more carefully. It was good for four hours and maybe a second
dose would work for another three. I began to arrange my schedule around the
opium like a dyed-in-the-wool addict. The nurse suggested I halve the clinical
trial drug for a while. I refused. I am not used to giving in to discomfort and
inconvenience. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">Finally, however, I skipped my last dose of the clinical
trial drug at the end of the sixth month. My weight had fallen to just over 100
lbs. on my 5’6” frame. I could barely walk. I could not eat and I was so dehydrated
that my eyes were dull. That is not to say that I gave up running. Of course
not. Every day, I set off for my five miles. I never made it anymore without
stopping on the side of the road to rest. I continue to be surprised that no
one stopped to ask if I was all right. I longed for a drink of water, but
forgot to take it with </span><span style="font-family: Calibri;">me because my decision-making was so clouded.</span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">At the six-month check the oncologist did not give me a
choice anymore. I was to stop the drug for at least a week until I felt a
little better. My relief at having the decision taken from me finally melted my
resolve to stick it out and I could not stop the hot tears. I ended up stopping
the drug for two weeks and the diarrhea stopped. I got my appetite back and
managed to run five miles without stopping again. </span></div>
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<a href="http://4.bp.blogspot.com/-vavC2nJRRMI/VE3RxAI7FvI/AAAAAAAAAFU/0eVhSfa84QE/s1600/1-DSCN4828.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-vavC2nJRRMI/VE3RxAI7FvI/AAAAAAAAAFU/0eVhSfa84QE/s1600/1-DSCN4828.JPG" height="150" width="200" /></a><a href="http://1.bp.blogspot.com/-nbE9bv8axhE/VE3R1c-8guI/AAAAAAAAAFc/GsGC433D3jo/s1600/1-IMG_3593.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-nbE9bv8axhE/VE3R1c-8guI/AAAAAAAAAFc/GsGC433D3jo/s1600/1-IMG_3593.JPG" height="212" width="320" /></a></div>
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<br />
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<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;"><o:p></o:p></span> </div>
<br />
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I am now back on the drug at the lower dose of 4 mg instead
of 5mg. I desperately hope that it continues to work but I also know that there
were serious QOL issues at the higher dose. I have no pain and no symptoms but
I’m not under any illusion that means I am fine. </span></div>
<div class="MsoNormal" style="margin: 0in 0in 8pt;">
<span style="font-family: Calibri;">I have had seven months more of life that I might not have
had. I have watched winter turn to spring then to summer and now to fall. I can
measure what I have done in actions. I have given academic presentations and
taught my students and listened to them and taken them out to eat. I have
helped them write scholarships and graduate school applications. I have written
letters of recommendation. <span style="mso-spacerun: yes;"> </span>I have fought
with the chair of the department when he was wrong. In the last seven months, I
have taken trips to Salt Lake City, Omaha, Tampa, St. Pete’s Beach, Las Vegas,
San Francisco, New York City (twice), San Diego, Orlando, and Anaheim and<span style="mso-spacerun: yes;"> </span>have attended 10 conventions. In seven months
I have run and/or walked over 1400 miles. </span></div>
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<span style="font-family: Calibri;">However, my life has been so much more than a series of
actions. I have worked and been a responsive and involved wife and mother and
professor. I have cooked and cleaned and played with the dog. I have found my
community of friends online who I genuinely love and respect. I have been a supportive
friend because I still can be one. I have still been able to give more than I
need from others. And so it is onward and upward.</span></div>
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