tag:blogger.com,1999:blog-167074062024-03-07T04:25:12.845-05:00Segwyne's LairMy random ramblings, mostly about sustainable living with a husband and 5 kids.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.comBlogger93125tag:blogger.com,1999:blog-16707406.post-32356480403454303102020-07-09T12:35:00.002-05:002020-07-09T12:35:12.246-05:00July 9
<br />
<div style="line-height: 100%; margin-bottom: 0in;">
We have started
round 5 of 6. Last week we had more diagnostic tests – a CT scan
of his chest and neck, a pulmonary function test, and an
echocardiogram. I learned yesterday that his heart looks fine.
There is some residual calcification in his neck lymph nodes, which
they said is fine as long as they don’t get bigger again.
Apparently also his lungs have some minor obstruction, similar to an
asthma patient, they said. But this has also been consistent
throughout the process. They only just told me about it yesterday.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Nausea is getting
worse for him. For the first few cycles, he was not having any
symptoms at home. The last cycle, though, he started taking a nap
when we got home. Last night I heard him throwing up, and he threw
up again today. I asked him if this is the first non-chemo day when
he has thrown up, and he said, “No.” He slept for about 20 hours
after we got home yesterday. He was up for a short while after we
got home, then he went to take a nap. He did not get up for supper.
This morning he got up, came downstairs and promptly went back to
sleep on the couch. I sent him back to bed to sleep and he finally
got up about 1:00. He had no breakfast yesterday, he was not hungry
for lunch, but he humored me and ate a snack pack of peanuts. He
missed supper last night, and breakfast this morning.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
I am so glad we are
almost done. Only three more rounds (six weeks) left, and then his
body can start getting back to normal.</div>
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p { margin-bottom: 0.1in; line-height: 115% }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-18625055184690230482020-06-08T06:55:00.001-05:002020-06-08T06:55:08.227-05:00June 8 update
<br />
<div style="line-height: 100%; margin-bottom: 0in;">
First, I want to
apologize for leaving everyone on a cliff-hanger last time. At the
most recent chemo visit, the doctor had some great news for us. She
had consulted with the lymphoma board and they all agreed that he was
doing so well that he could skip both the radiation <b>and</b><span style="font-weight: normal;">
the extra chemo. That means we are now halfway through the
treatment, and (barring unfavorable blood tests that results in
waiting an extra week) he will be all done with chemo before school
starts in the fall.</span></div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<span style="font-weight: normal;">This
last time, lab results were borderline. They said the numbers were
strong enough to continue the cycle he was on, but if he was starting
a new cycle, they would have waited another week so his body could
strengthen up some more. They said his bone marrow is getting tired.
I’m not surprised, it has been working overtime for three months
now. </span><span style="font-weight: normal;">I’m trying to feed
him more bone broth to support his marrow. Chicken noodle soup seems
to be a lunchtime winner.</span></div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<span style="font-weight: normal;">We
seem to have gotten a handle on his nausea. It seems to be entirely
related to the administration of the chemo, rather than the presence
of the chemo in his body. A large part is from anxiety, but a
significant part is also from flushing his line. Every time they
administer a drug through his port, they have to do a blood draw (to
make sure the line is clear and flowing properly) and then flush the
line with saline. He can taste the flushing. The saline creates an
unpleasant taste in his mouth, and then his focusing on it escalates
it to nausea. So we start with </span><span style="font-weight: normal;">skipping
breakfast, then </span><span style="font-weight: normal;">taking an
anti-anxiety pill (Ativan/lorazepam) on the way to the hospital,
along with an anti-nausea pill (Zofran/</span><span style="font-weight: normal;">ondansetron).
Once we are there, we get him distracted with his Chromebook and he
watches YouTube videos of people playing Roblox (his favorite game
platform). With the videos distracting him from the taste in his
mouth, he only has to spit to get rid of the unpleasant flavor. </span>
</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<span style="font-weight: normal;">So
here we stand at the halfway mark. Once his chemo is done, they said
that they will continue to see him every three months to monitor his
progress for a year, then every six months after that.</span></div>
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p { margin-bottom: 0.1in; line-height: 115% }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-77958281268963497292020-05-17T20:09:00.003-05:002020-05-17T20:09:46.588-05:00May 17 UpdateIt has been a few weeks since I last updated here, and I apologize.
Quarantine is starting to get to me, and with the weather warming up, I
am trying to spend time outside. So let’s get everyone caught up on the
last two rounds of chemo and the battery of diagnostics.<br />
<br />
The
4th round of chemo was harder than the previous ones. Eirik threw up
his breakfast, and one of the nurses took him to go get another one at
the cafe just down the hall. Unfortunately, he lost that one, too, so
we didn’t try to feed him again until lunch when we were all done.
Apparently the problem is the taste of saline in his mouth when they
flush his port before each medication. The nurse gave him gum to try to
mask the flavor, but it was not wholly successful as it has been in the
past. One of the nausea medications for him is lorazepam (Ativan), so
the doctor suggested that he take one on the way up to the next visit.
He also developed a brief rash over his torso when he received the
injection in his arm. That is the one that is supposed to help support
his immune system by stimulating the production of white blood cells.
It faded very quickly, probably within 1-2 minutes, right before our
eyes.<br />
<br />
I told the nurse that I had noticed that their
staff always used superlatives when telling me the results of Eirik’s
bloodwork each week. I had been thinking about his immune system, and
since our family almost never gets ill (I truly can’t recall the last
time anyone had the common cold, flus last only a day or two, and
stomach bugs only last 8-12 hours), I wondered how his numbers compared
to those of healthy, non-cancer patients. She told me they primarily
track four things (and I don’t remember them all), and of those four,
two are in the normal range for a healthy person, one is about one point
below normal, and his liver enzymes are just slightly higher than
healthy (it is his liver that detoxifies his system from all the
chemo). She was quick to point out that those four numbers are not the
entirety of his immune system, so don’t consider him healthy right now,
but it was very reassuring to hear that his compromised immune system
was so similar to most people’s non-compromised systems.<br />
<br />
The
following week, we had a series of tests. We started at oncology to
have his port accessed. This means they took a needle and inserted it
into his skin at the port. The port serves as a giant target for the
IV. To make this as painless as possible, we apply a numbing cream
(lidocaine) on the drive up to the hospital. By the time we arrive, it
is numb for him. From oncology, we went first for the PET scan. He was
injected with the radioactive sugar, and had to lie still for an hour
before being scanned. The scan itself only took maybe 15 minutes, if
that. We then went to his echocardiogram. He was curious how they
would take pictures with his port in place, but they just held it at
different angles to get around it. The last test was his pulmonary
function test (PFT), where he had to breathe in and out of a machine, do
deep breaths, hold his breath, breathe out hard, etc. Finally we
returned to oncology to be deaccessed (having the access needle removed
from the port). As soon as we walked down the hall to the pediatric
unit, he threw up. He just got a to a trash can in time. The
interesting part is that nothing had happened to him. He said it was
the smell of the department. I don’t smell anything weird there, but
apparently cancer patients have sharper senses of taste and smell. The
doctor suggested two Ativan pills instead of one for the following
week’s chemo, along with Zofran, another of the anti-nausea medications.
<br />
<br />
While we were there, one of the doctors came in and
told us that he already had the PET scan results back and could see that
there is no more active lymphoma present. This was wonderful news!
The treatment was working well. <br />
When they removed the sterile
window bandage over his port, his skin turned bright red. It was much
redder than you get when you rip off a bandaid quickly, so they wanted
to keep an eye on it, but it didn’t last long. <br />
<br />
The
next week was the next round of chemo. He took the extra medications as
suggested, and also brought his Chromebook to keep himself occupied.
He hadn’t taken it the last round, and it would not have been a good
idea with all the tests. A few times he asked the nurse when she was
going to do XYZ and she had already done it, so I think the
medication/distraction combination was successful. He did not throw up
at all this time, though he did spit a couple of times to get rid of the
unpleasant saline taste.<br />
<br />
Apparently the standard
treatment for Hodgkins Lymphoma includes radiation therapy in addition
to the chemo. But in his case, it would most likely damage his thyroid
due to the location of the cancer on his neck. This could be
counteracted by putting him thyroid medication for the rest of his
life. Radiation also runs a risk of secondary cancers down the road.
However, since his cancer responded so well to treatment, another option
is a few more rounds of chemo instead. The doctor was very conflicted
about what to recommend, and said she is going to take Eirik’s case to
the lymphoma board that meets weekly to get more opinions. As bad as
all the radiation sounded, she assured me that it brings the success
rate up to 95%, compared to 85% for chemo only treatment. She told me
that of the families that have faced similar situations, the results are
split about evenly between those choosing to do radiation and those who
choose the extra chemo. I am very, very strongly leaning to skipping
radiation. The side effects of a damaged thyroid are pretty horrid, and
yes, they have thyroid medications to mitigate them, but he would have
to be on them for the rest of his life. He is only 13, and has another
70 good years ahead of him. Honestly, I don’t trust the pharmaceutical
industry to not crumble before that under pressure from peak oil,
climate change, and economic stressors. I kept that last thought to
myself as I talked with him about the options. He said he would prefer
to skip the radiation, even though it gives the cancer a 1 in 7 chance
of coming back instead of a 1 in 20 chance. One of my other silent
thoughts was why risk trading in a known cancer (the lymphoma) for an
unknown (secondary) cancer caused by the radiation? Especially if the
treatments for recurring lymphomas are as excellent as the doctor
suggested. I expect to hear from the oncologist by the end of the week
regarding the board’s suggestions.<br />
<br />
So that is where
Eirik stands as of now. His next PET scan is in early July, and I can
only assume this is to make sure the cancer is staying away and that the
last test wasn’t a fluke. We continue with bi-weekly labwork and chemo
visits until at least mid-August, more likely mid-October or early
December.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-91156420387515645392020-04-22T10:53:00.002-05:002020-04-22T10:53:31.357-05:00April 22 updateIt has been a week since Eirik’s third round of chemo. Honestly, I expected this journey to be a lot more dramatic than it has been. He has minimal side effects. Maybe because we are quarantined, we just aren’t having any social drama, but I think we would be skipping it even without quarantine. <br /><br />The routine is to go to the local clinic for bloodwork every other Monday (a whole 45 minutes from leaving home to returning), two days later we go to CHaD (Children’s Hospital at Dartmouth) for his infusions (which takes half the day), then every weekend he takes an antibiotic. That’s it. <br /><br />Each time he has gone in for bloodwork, they say that his results are “perfect!” He has started to hate needles, though.<br /><br />On May 6 he will go in for another battery of diagnostics so we can see what kind of progress there is. He will have another pulmonary function test for his lungs, an echocardiogram for his heart (one of the medications can potentially cause heart damage), and the PET scan again. He can still feel lumps in his neck, so I know it isn’t all gone yet, but things are looking good.<br /><br />He gets nauseous for the day of chemo, and maybe a little bit the next day, but it is manageable for him even without medications. I have told him there is no virtue in declining the anti-nausea pills, but he still doesn’t want them. I’m fine with that. He just takes a bowl to bed with him, but never actually uses it.<br /><br />His hair is thinning out. A stranger wouldn’t be able to tell yet since he has thick hair to begin with. But when he pulls off the hood from his sweatshirt, there is hair all over it. We suggested he may want to start wearing a hat to dinner (oh the scandal!) to keep his hair from falling in his food.<br /><br />I have stopped obsessing about Covid. It was really killing me emotionally, and since there is nothing more I can do to affect it, there is no point in my following it. Checking now, I see there are 2.4 million cases worldwide, 1491 in my state, and 1-4 in my town. I managed to go 3 weeks between my last two grocery shopping days, and am hoping to eke out 4 weeks before the next trip. I am very grateful for my pantry and freezer. <br /><br />Otherwise, life is just normal here. Thank you for being interested in his progress. We appreciate everyone’s love and concern.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com2tag:blogger.com,1999:blog-16707406.post-13601478501572637892020-04-03T09:27:00.000-05:002020-04-03T09:27:08.346-05:00April 3 Update
<br />
<div style="line-height: 100%; margin-bottom: 0in;">
On Wednesday, Eirik
had his second round of chemo. This time Ben took him. I have done
all the other appointments so far, and I want him to understand the
process, meet the staff who are working with Eirik, and have a chance
to directly ask any questions he might have. Apparently when they
arrived at the hospital, the door staff didn’t want to let him in
because they are not allowing any visitors at this time. He said he
didn’t have to argue it once he pointed out that Eirik is only 13.
Whew!</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Since we are doing
remote learning due to school closures, the teachers are organizing
time online for virtual classes. Most teachers seem to be collecting
each class once a week for video class at this point, though that may
likely change since initial three week shutdown is coming to a close
and on Monday we enter the extended closure. The significance of
this is that when they thought that school would only be out for 3
weeks, they decided not to teach any new stuff to the kids, who are
already traumatized by the current crisis, and so they were merely
having the students practice the skills they already had learned.
Now, though, they are seeing that school will be down for longer
(honestly, I don’t see them going back at all this year, certainly
not by May 4), and have decided that the students do need new
material to learn and work with, so on Monday they will make that
shift. So anyway, back to Eirik. He had a class scheduled for
Wednesday morning at the same time as he would be at the hospital for
chemo. He took his laptop with him so that he could attend class
from the hospital.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Ben said that
listening to Eirik participate in the virtual classroom and in the
social time after class showed him that we need to better facilitate
time for Eirik to virtually hang out with his friends. Eirik was
very active in class, and I believe Ben said he was a “ringleader”.
Knowing how fond the staff at school are of him, I am sure he was a
conversation ringleader rather than a mischief ringleader. I’ve
decided therefore to give him access to his school Chromebook all day
rather than just during school hours. It still has to go away before
bedtime, but since we don’t yet allow him to have his own phone, it
seems to be the only way right now that he can see his friends.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
They left for the
visit at 6:45 to get up there by 8:00, and they returned again around
2:15. So now I know how much time to expect to spend at each visit.
The first round of chemo was immediately after his surgery, so we
were gone the whole day. We did forget to pack a lunch for them, but
they were able to find decent food at good prices in the cafeteria.
They also ate a second lunch when they got home. Eirik’s appetite
has fluctuated between famished and just not hungry at all, and that
was a famished day. He had 3 hamburgers for breakfast, and 5 eggs
when he got home after having a cheeseburger and candy bar at the
hospital. He also didn’t seem to suffer from the nausea as much
this time, either. We gave him one pill for it, and it seemed to
work this time. Something to be grateful for. I was so sad watching
him be so miserable last time for two solid days and nothing I gave
him was helping.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
I have had to stop
looking at the Covid numbers because they are becoming completely
overwhelming. Yesterday they topped a million cases, the day that I
told my family nearly a week prior that they would. Confirmed cases,
I should say, since testing here in the US is completely inadequate.
My state reports how many cases are in which towns now (previously
they only counted by county), so we can see how close it has been
found to us. Those are much smaller numbers right now, with (so far)
under 500 cases in the whole state. The last numbers came out
yesterday morning and have not been updated for today as of the time
I am writing this. I’m sure they will be up there tomorrow. I am
learning how to cope with this. My best strategy so far is to not
look at the numbers and limit my time on Facebook. I don’t have
other social media, so that’s it for me. I can’t be a good (or
even mediocre) parent for my kids when I am collapsing from anxiety,
and stressing over the numbers won’t change any outcomes for us
since we are self-isolating as much as we possibly can. So in this
case, I can safely ignore it.</div>
<style type="text/css">
p { margin-bottom: 0.1in; line-height: 115% }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-27240478542061140072020-03-28T17:16:00.001-05:002020-03-28T17:16:22.451-05:00March 28 updateIt has been a week since the last update, but there isn't much to report. Eirik’s nausea seems to have eased up after the first few days. He is enjoying life as normal, or as normal as is possible in lockdown. He’s keeping up on his schooling, he’s going outside for some sunshine every day (a requirement if he wants to play on the computer), he’s playing games with his sisters. <br /><br />On Monday he goes in for labwork to make sure his blood counts are satisfactory before more chemo on Wednesday. He has to take antibiotics every weekend, and the pills are very large. I have to cut them in half for him to be able to swallow them. All in all, there isn’t much to report. I’ll check in again next week.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-37812613851908703252020-03-21T20:38:00.000-05:002020-03-21T20:38:07.248-05:00March 20 update
<br />
<div style="line-height: 100%; margin-bottom: 0in;">
We have now had an
opportunity to tell all of the closest friends and family about
Eirik’s condition, so I am now going public with this story. If
this is your first time hearing of this, <a href="https://segwyne.blogspot.com/2020/03/the-beginning.html">I began the story here</a>.
</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Yesterday I took
Eirik to the hospital to have a port installed. If you don’t know,
a port is like a permanent IV. He will need IV infusions every two
weeks, and instead of sticking a needle in him every other week, they
just surgically installed one directly into an artery in his chest.
This gives them a much bigger target to hit with the needle rather
than the comparatively tiny veins in his elbows, and thus will make
it much easier and less painful for him.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
What a difference
two and a half weeks has made in the surgery wing. There were no
students, no other patients. Eirik wanted more people to joke around
with, but access to the surgery wing has been greatly restricted. I
was only allowed to go with him because of his age. He was joking
around with the few people who were there, and I was very glad to see
that Greg would be his attending nurse again. The procedure was
pretty quick, and I spent the time reading the 75+ page binder I was
given titled “Pediatric Oncology Family Handbook”. Not exactly
riveting material, but valuable information. When I was called back
afterwards, Eirik was still sleeping. When he did wake, he was
groggy for quite a while, and not his jovial self. I was a bit
concerned about his ability to walk, but the standard seems to be to
put him in a wheelchair for discharge. Fortunately, the halls at
DHMC are quite wide, because he insisted on wheeling himself for much
of the distance from Same Day Surgery to Oncology, which are at
opposite ends of the building, and on different floors. He tended to
veer to the left, which is easily explained by the fact that he is
right handed. I told him how to steer by turning only the wheel on
the side away from where he wanted to go. By the time we got ¾ down
the hall, his arms were tired, so he let me push him the rest of the
way.</div>
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<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
The Pediatric
Oncology Unit is a fun place. It is brightly decorated, and has lots
of things to entertain the kids. We started with eating the lunch I
had packed since it was 11:30 and we hadn’t eaten at all yet.
Eirik found the gaming system and I had to tell him to wait on games
until after he ate. I met with various doctors and nurses who gave
me information overload again while he played. We got a tour of the
unit, and Eirik paid particular attention to where he might find
snacks and drinks, as well as video games. I talked over lots of
alternative therapies with the doctor and noted which ones might be
appropriate, and which we should avoid. Many of the therapies I had
listed are for adult cancers, which apparently behave differently
from childhood cancers. We also sorted out ones for solid tumor
cancers vs. blood cancers. Many of the alternative therapies were
eliminated because they weren’t applicable.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Eirik received over
half a dozen infusions while we were there. They started with a
saline flush to get things ready and make sure the port was working
properly. The first drug was an anti-nausea medication, since nausea
is a major side effect of the chemical cocktail (called ABVD), and
then a heart protector, since the next medicine is known to damage
the heart. Then there were four different infusions, followed by a
saline flush, and then heparin to help prevent clotting in the port.
These took probably an hour or more in total. Finally, he was given
a shot to help stimulate his bone marrow to generate white blood
cells to support his rapidly weakening immune system.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
We were finally
ready to head home about 6:00. At dinner I found and peeled 3 EKG
sticky leads off of his body, which reminded Ben of The Matrix, so we
watched that after dinner. Eirik struggled with nausea throughout
the movie, and none of the three medications we were given for him
seemed to help. He did not throw up, but he did hug a bowl the
whole time.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
As we were leaving
the hospital, I received a text from Lauren saying that someone at
her workplace had contact with a known Covid case. She didn’t know
who, nor what department, nor what shift, so we don’t really know
how much to worry about it. Total NH cases were up to 44 yesterday.
Today as I type this, they are up to 55. And Ben just told me that
as of 28 minutes ago, NHPR reported 65 cases. Driving up to CHaD
feels a bit apocalyptic, with big flashing signs on the side of the
interstate declaring “COVID 19 MORE INFO AT HEALTHVERMONT.GOV”.
They are particularly eerie in the predawn.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Eirik’s immune
system is expected to fall over the next 7-10 days, but the nurse
said he should be fine for one last visit with friends today, so we
made our last public appearance. On the way home, he struggled with
nausea, which is unsurprising given the quality of roads around here
right now. We will officially go into our own quarantine tomorrow,
with only work, babysitting, and one weekly grocery shopping as the
exceptions. Things are tense here, tempers are short, and I hope I
have the strength to not snap. My husband has been having a hard
time keeping himself together at work. He doesn’t want the news to
run rampant through the rumor mill, but he hasn’t found a good time
to tell his friends there yet. He is feeling very protective and
helpless at the same time. I suggested that he take Eirik for his
next round in two weeks so that he can meet the staff and get first
hand information (since I’m sure I forgot over half of what they
told me) and ask any questions that he may have.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Our new normal looks
like it will include biweekly hospital visits and biweekly labwork
(which can be done at his PCP’s office). I am so glad that it is
only an hour’s drive each way. It is close enough to not be a
hardship and we can go whenever we need to, but also far enough away
that it makes sense to combine things as much as possible. So that
is it for now, I think.
</div>
<style type="text/css">
p { margin-bottom: 0.1in; line-height: 115% }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-82098594601004517712020-03-18T14:38:00.000-05:002020-03-18T14:38:12.353-05:00March 18 update
<br />
<div style="line-height: 100%; margin-bottom: 0in;">
I am exhausted. And
we haven’t even really begun yet. Yesterday Eirik and I spent the
whole day at Dartmouth for diagnostic testing and meeting doctors.
We started out with an echocardiogram, where they used ultrasound to
study his heart. The technician took about 90 pictures and videos of
his heart. Some of them were creepy, and reminded me of sci-fi alien
mouths as the valves opened and closed while pumping his blood. It
was dim in the room, and I nearly took a nap. That lasted a half
hour.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Next up was to
follow up with the surgeon. Dr. Chatoorgoon explained that Eirik
will need a port, which is a type of permanent IV, in his shoulder
for his chemo treatments. If they can do an inpatient procedure
(where he spends the night at the hospital), he will also get his
first round of chemo at the same time. If it has to be outpatient,
then the chemo will be scheduled separately. I signed the consent
form for that surgery. He asked if I had any questions for him, and
most of my questions are treatment related, but I did have a couple
that he could answer. This is not a solid tumor cancer, which was a
term that I had seen on some websites, and as for being a metastatic
cancer, that was a little trickier, since I guess Hodgkins has its
own staging system.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
From there we went
for a pulmonary function test to check his lungs. This involved a
lot of heavy breathing into a machine. “Breathe in, hold it, blow
it all out as hard as you can for as long as you can after you are
sure there is no more breath in you. The machine analyzes it.” He
needed to have two matching results, which took four attempts. He
saw a treadmill in the corner of the room and really wanted to use
it, but the tech said no. He did get to bring home the nose plug,
though, which vaguely resembles a padded clothespin. This adds to
his collection of a paper surgery hat, and the oxygen mask from his
first surgery as well. The older technician was obsessed with asking
me questions about how remote schooling was going to work. I had no
good answers for him because I didn’t know myself, but he kept
pushing and I kept saying, “I don’t know. I just don’t know.
I’m sure they will figure something out.” Apparently we were the
first school age family he had seen all week. He also went on to
gripe about how technology is destroying families today, and he knew
young parents who spend their whole weekends on their computers
playing games while their toddler runs around unsupervised and his
friend (the grandmother of the toddler in question) goes to take the
baby out for fresh air that she otherwise wouldn’t get apparently.
I suddenly was very conscious of being on and off my phone trying to
manage emails from a pool of up to about 20 teachers while still
keeping Eirik on schedule for his appointments there at the hospital.
The socially oppressed woman in me tuned out the ranting in the
hopes he would shut up about it.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
With two of three
diagnostics done, we went to meet the oncologist, Dr. Kim. She is a
lovely lady. She explained about the process in general, little of
which I can remember now due to information overload. She also gave
me a three-ring binder that we will bring to all of his visits. The
social worker Sally gave me a folder stuffed full of resources for
families. I have not had time or energy to go through it all. She
told me that I have been in no way overreacting to the diagnosis
given the pandemic, and gave me a copy of the letter they recently
sent out to all of the cancer patients that basically instructed them
all to completely isolate themselves since they have no immune
systems. I asked how chemo will work once all the hospitals are
overworked. She told me that his chemo will be outpatient, so he
won’t need a bed and his treatment should not be interrupted.
Because we are so rural, and they draw patients from all of NH, VT,
and parts of ME, there is no in-person support group for Eirik or for
us. She said there are online options, but I haven’t taken time to
hunt them down yet. I will ask for help with that at the next visit.
Dr. Kim also asked about his dentistry. Apparently, he should not e
going to the dentist during chemo and she asked me to reschedule his
cleaning. When I tried this morning, I found that the dentist is
closed for the next three weeks minimum, so I left a message for her
relaying that information. Eirik asked about hair loss, and she said
that some lucky patients don’t lose their hair. Also, that
patients usually do NOT lose their eyebrows, as I had thought. She
also assured him that he is highly unlikely to end up looking like
Deadpool. Having never seen that movie, I don’t know what he is
picturing. I know that he saw it at his dad’s when he was nine, so
maybe his impressions were more scary since he was really too young
for the movie then. During this visit, they also inserted an IV into
his elbow and drew some blood for labwork before sending us off for a
PET scan.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
We arrived at
Radiology and Eirik got pumped full of radioactive sugar. That was a
little tricky because the IV got kinked, so they had to adjust it,
but finally he was settled in to let it travel throughout his body.
He was instructed to lie still and be quiet and not talk, but that
was really hard for him. He was running out of patience by now, and
understandably so. When it was time to scan him, they took him to
the bathroom first. He noticed that the bathroom said,
“Radioactive,” and the nurse said, “So are you.” The scan
didn’t take as long as the waiting did, and we were finally ready
to head home.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
As we got in the
elevator to head up to the parking garage, there were another woman
and man in there already. She said to him, “They wouldn’t test
me because I don’t have enough symptoms, even with the cough.”
No mask on her, no way to get ten feet from her in the elevator.
Now, I don’t know what test she was denied, but of course, my brain
jumped to Covid. Upon first entering the hospital at the main door,
everyone was being “screened”, meaning asked if they had symptoms
or had traveled or been exposed to any known or suspected cases. We
were asked this at every appointment we were at, for a total of six
times. So that was disturbing.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Today I got a call
to schedule his port surgery. They are canceling all elective
surgeries, but his is considered non-elective. I find out tomorrow
if it is inpatient or outpatient. We will go full isolation starting
on Sunday, with only my husband going to work because he has no paid
time off left, and my daughter going to work at the nursing home to
make sure everyone there is fed. I suspect that, relatively
speaking, she has fairly high seniority in the kitchen, having been
there for a year and a half and seeing a complete change of staff.
The only other contacts we will have will be the two small children I
babysit for 3-6 hours a week so their dad can go to work. I will
make weekly trips to Keene to pick up whatever we need and for
necessary appointments, which are few. I will see if it would be
practical to do my therapy via phone call, because I need therapy
right now.
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
As I was sitting
here writing, I received a call from the oncologist. The good news
is that his disease is stage 2. He has swelling on both sides of his
neck, and some in his chest. His full diagnosis is of Classical
Hodgkins Lymphoma, subtype is Nodular Sclerosis, which is the most
common of the four subtypes and very treatable. The treatment will
be chemotherapy that is referred to as ABVD, and they expect 4-6
cycles of treatment, with each cycle lasting 3-4 weeks each. The
number and length of each one will depend on how quickly his body
responds.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
Yesterday before we
left, Covid numbers in NH were 17, I think. As of the time I am
writing this (2:30pm) they are up to 26. We picked up all the kids’
school stuff from the schools. At the high school, we made
appointments and went to the lobby, where the teachers had their
supplies arranged on tables. There were a couple staff to collect
the proper supplies for each student. At the primary school, we were
to drive up like for student pick up and drop off, and stay in the
car. The staff brought out the packages to us. At the middle
school, there was a route and it was also by appointment. Empty the
lockers first, sign out a Chromebook, empty the gym locker if needed,
and back out again.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
The high schoolers
are expected to log into their online classrooms every day during
their regular class time for attendance. Personally, I think that is
ludicrous. Everything is stressful enough, even for those who don’t
have new cancer diagnoses in their homes. Let the kids check in and
work when they are most mentally and emotionally prepared to do so.
If that means sleeping in every day and a study binge on weekends,
fine. The middle school is much more realistic, partly because the
students’ schedules are different every day. They just want to
hear from the kids every day or two. The primary school doesn’t
seem to have an attendance policy right now. They sent home a pile
of books and worksheets to do on our own schedule.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
So there we go for
now. We await surgery in two more days. I will see if Eirik is
interested in making a video with his thoughts on this for you. No
promises, though.</div>
<style type="text/css">
p { margin-bottom: 0.1in; line-height: 115% }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-43281414018592307982020-03-18T14:37:00.000-05:002020-03-18T14:37:28.105-05:00The Beginning<br />
<h1 class="western">
March 12, 2020</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
It has been four
days now since I learned of my son’s diagnosis of Hodgkin’s
disease. I am still struggling with feelings of denial, anger, and
guilt. I am particularly frightened because I understand the
standard treatment is chemotherapy, which kills the patient’s
immune system, and the worldwide Covid-19 pandemic is knocking at our
door. Can you think of a worse time to kill someone’s immune
system?</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
I decided to start a
blog for two primary reasons. I want a place where I can talk about
how my family is dealing with it, and I want to be able to put out
information about how things are going and not have to answer the
same questions over and over and over again. I will post a cast of
characters for those of you who don’t know every single person in
my family. This blog is written to keep my friends and family up to
date, though all are welcome here. If you have a question about
something I’ve written, please leave a comment. If you’re
wondering, chances are someone else is, too. And as I go through
emotional ups and downs during this time, my writing may not be as
clear as I think it is. But please check the FAQ first to see if
I’ve already answered it, since the point of this is to only have
to answer each question once.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
At this point, we
have very little information. We go in to the hospital (assuming it
is not overwhelmed yet) for diagnostic testing and staging in a few
days. The very few people I have told have asked how they can help,
and honestly, I have no idea. I don’t know what we need yet,
partly because I don’t even know what we are looking at.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<h1 class="western">
October 2019</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
In early October,
Eirik went in for his annual well-child visit (formerly known as
checkups). While she was examining him, our doctor felt his lymph
nodes and noticed that there was a small lump. She ordered an
ultrasound just to make sure it was nothing to worry about. Of
course, ultrasound techs are not allowed to tell you anything about
what they see because they are only trained to take the pictures, not
interpret them. A couple days before Halloween I was at a business
conference and the radiologist called me on my cell phone to tell me
that the images needed to go to oncology and we needed to schedule a
biopsy. I asked if there was anything else we could do instead, and
they said we could try antibiotics to see if it is just an infection.
We put him on amoxicillin and within four days he broke out in hives
all over his body. He desperately tried to convince me it was
chicken pox, but we took him off the amoxicillin and he cleared right
up. I couldn’t wrap my brain around the idea that my 13-year-old
son could possibly have cancer, so I ignored it for a while. I told
him that if it didn’t go away on its own by the end of the year, we
would call the doctor again.
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<h1 class="western">
January 21, 2020</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
Sure enough, January
rolled around and he pointed out that his lump was still there. So
reluctantly I called and we went to meet the surgeon on January 21
and get his take on things. Eirik was Mr. Funnyman and joked about
growing a new head, and being Zaphod Beeblebrox. He mentioned that
at one point he thought he had a lump on the other side of his neck,
too, but no one could find it when they looked for it in that moment.
He said that if he was growing a third head, he would be the knight
from Monty Python and the Holy Grail. Eirik’s sense of humor and
his cultural knowledge impressed the surgeon. He was also impressed
at the size of the lymph nodes, remarking that they were among the
largest he has ever seen. He said that he doubted it was cancer
because Eirik has no other symptoms – no appetite loss, weight
loss, night sweats, etc. But he didn’t know what else it might be.
He ordered some bloodwork for testing and we made a follow up
appointment to go over the results.
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
This was also about
the time I learned about the coronavirus, but the intersection of
these two things did not occur until much later. After all, this was
a disease that only existed in China, and they were containing it by
locking down Wuhan. Far away from me and my son.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<h1 class="western">
February 14, 2020</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
Ben and I both took
Eirik to the appointment where we learned that the blood tests didn’t
shed any light on the problem. “Congratulations!” the surgeon
said. “We have no idea what’s wrong with you.” I told him
about Eirik’s newfound allergy to amoxicillin, so we tried
azithromycin instead. Eirik tolerated that well, but the lump
stubbornly remained, so I agreed to the biopsy. I just had wanted to
exhaust all other options before allowing my child to be sliced open
and cut apart.
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
By now there were
about 600 cases of Covid-19 outside of China, so just to be super
safe I decided to use our tax refund to stock up the pantry (which
was woefully bare) in case of supermarket closings. Because I
thought that seemed like a reasonable thing to do. I did, in fact,
purchase a 50# bag of rolled oats, a 25# bag of beans, another of
rice, and two dozen cans each of crushed and diced tomatoes, along
with two dozen pounds of butter so that in the unlikely event that
food availability becomes an issue, at least we will have chili to
eat while we all go stir crazy.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<h1 class="western">
March 2, 2020</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
On March 2, I took
Eirik to the hospital for surgery. As they prepped him, he was
cracking jokes and making everyone laugh. The nurse remarked that it
was a very healthy and mature coping mechanism for the fear he was
likely experiencing. The procedure went well, and the surgeon came
out to tell me that he had removed a lymph node “the size of an
egg”. There was another equally large node he wanted to remove,
but he couldn’t get it out without making a larger incision, and
since this was just a biopsy, he left it. Eirik recovered well, and
quickly regained his sense of humor as he held his anesthesia mask up
to his face and breathed raspily through it, holding out one arm and
saying, “Luke, I am your father!” He wanted to bring home the
paper beret he had worn in the operating room, and the nurses gave
him a spare since they had thrown his out before he woke up. It was
actually the very first thing he said upon waking - “Where’s my
hat?”</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
Covid-19 had come to
the US, but it was pretty much only known to be on the West Coast.
As Eirik was being prepped for the surgery, the nurse asked some
standard registration questions - “Any cough or fever?” “No,
and no international travel, either.” He then remarked that there
was a case in the hospital there that was being tested, but hadn’t
been confirmed yet. Sure enough, that was the first case in my
state, which grew to four cases within a week.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<h1 class="western">
March 9, 2020</h1>
<div style="line-height: 100%; margin-bottom: 0in;">
On March 9 at 9:05 I
received a call from the surgeon. He sounded uncomfortable to me,
and I quickly found out why. The testing had all come back negative,
but when they put it under the microscope, they found that it is
lymphoma. I could expect to hear from pediatric oncology later in
the day to schedule appointments to meet the team. Knowing that my
family is very sensitive to Mercury retrograde, I asked if it could
be looked at again after Tuesday. I said that I knew I was sounding
superstitious, but maybe a label got put on wrong or something. I
couldn’t understand how it would only show up on one of the several
tests they did. He said that he watched them put the label on it in
the operating room. He was very sorry and wanted to let me know as
soon as possible. He himself had only just found out. I did in fact
receive a call later that day and the scheduler was able to fit all
of his initial appointments in on the same day that we were already
scheduled to go up there for the final follow up with the surgeon.
Being an hour’s drive away, I would rather spend one whole day up
there than multiple short days.
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
I told Ben, and I
told Jenny. I needed to be able to cry about it. When Eirik got
home from school after drama rehearsal, I told him. He seemed very
casual about it. I asked him if he wanted to tell people himself, or
if he wanted me to do it. He chose to do it himself, but it wasn’t
until the next day that he felt ready to do so. We are waiting to
make it public until he has had a chance to tell everyone he wants
to. As seems to be his MO now, he used humor to make it easier.
“So, Cait, you’re going to get your wish! I’m getting rid of
my hair!” “What?! No! I wanted you to get rid of the hair<b>cut</b>,
not the hair. Grow it out instead.” “Nope, it’s all going to
fall out.” His five sisters all responded differently, naturally.
One fell to the floor and wept, two tried to put on a brave face and
not cry for him. He said (with a grin) that he will punch anyone who
cries about it. Another sister said, “Okay,” went to her room,
and dry heaved. When I asked Adelle if she knew what cancer is, she
said, “Not really. Uncle Doug had it, right?” So she is aware
of the new sense of grief in the house, but hasn’t learned to be
terrified of the disease yet.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
<div style="line-height: 100%; margin-bottom: 0in;">
The very few other
people I have told have all asked me the same thing, “What can I do
to help?” I came up with some answers in the <a href="https://segwyne.blogspot.com/2020/03/our-cancer-faq.html">FAQ</a>.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br /></div>
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a:link { so-language: zxx }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-40344738871367997122020-03-18T14:35:00.002-05:002020-03-18T14:35:35.428-05:00Our Cancer FAQ
<br />
<b>What is the diagnosis?</b><br />
<div style="line-height: 100%; margin-bottom: 0in;">
Classic Hodgkin’s
Lymphoma, subtype nodular sclerosis, stage 2. He has swollen
glands on both sides of his neck and in his chest. Diagnosis established in mid March, 2020.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<b>What can we do to
help?</b></div>
<div style="line-height: 100%; margin-bottom: 0in;">
I don’t know what
our needs are going to be yet, so this list will change with time,
but for now:</div>
<ul>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
I would like
someone to come over and do a massive meal prep and cook day with me
so I can stock my freezer with pre-made food for the days I will
have no motivation to cook.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Remember that
Eirik is still a young man and not just a cancer patient. He is so
much more than the disease. He is already worried about losing
his identity to the cancer.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Take a look
at my Rings diagram and understand where you fit. This will help
minimize stress on us.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Don’t tell
us how we “should” be feeling. We will be going through all
kinds of emotions and cycling through them, I’m sure. The way we
“should” be feeling is exactly how we are feeling. If we try to
ignore how we are truly feeling, then it will add stress and may
have negative side effects later on.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
If we say we
don’t want to talk about it, please honor that. This is going to
consume a huge portion of our lives for the next several months and
we want to be able to focus on other things sometimes, too. If we
don’t, we will go insane.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Please don’t
tell me you’ll “pray” for us. I am still slightly traumatized
by Christianity, and its language still gives me the heebie jeebies.
You can hold us in your thoughts, send us positive energy or love,
but please don’t tell me you will “pray” for us, even if you
will. It's just the language that is hard for me, not the
concept.</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
If you are
sick, please don’t come over. I am newly terrified of Covid-19
(which I had no personal fear of until the diagnosis) because chemo
will kill Eirik’s immune system and leave him vulnerable to
everything.
</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
For the love
of all that is sacred, do not tell us any stories of people you know
who have died from this. That isn’t to say that you can’t tell
us that you have lost someone to cancer of some sort. Telling us
<i>your </i>experiences has the potential to build connection.
Telling us <i>other people’s</i> experiences (especially if they
didn’t survive) only serves to build more fear and anxiety. We
have enough of that already.</div>
</li>
</ul>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<b>Who can I talk to
about it?</b></div>
<div style="line-height: 100%; margin-bottom: 0in;">
That depends on what
your goal in talking is. If you are looking for updates, you can look
here. I will keep all public information about it here. If it isn’t
here, then either we don’t know, or we aren’t ready to make it
public. If you think I forgot something, shoot me an email. If you
are looking for your role, go check out the <a href="https://segwyne.blogspot.com/2020/03/rings.html">Rings page</a>.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<b>Did you hear
about X treatment?</b></div>
<div style="line-height: 100%; margin-bottom: 0in;">
Probably. Anyone who
knows me well knows that research is one of my coping mechanisms.
Treatments I have heard about (and therefore you don’t need to tell
me) are:</div>
<ul>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
GAPS diet,
ketogenic diet (don’t even suggest a vegan diet to me, I will
laugh in your face)</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
organic diet</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
potassium
rich diet</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
green beans,
garlic, leeks, asparagus</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
organic raw
colostrum</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
meat stock</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
raw,
fermented cod liver oil</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Essiac tea
</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Miso soup</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Just Thrive
probiotics</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Catalyn
vitamins</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
mushroom
therapies (Epimune Complex or Immune-Assist)</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Biosuperfood
F3</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
pancreatic
enzymes (Pan-Immune)</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Black-out
curtains for better sleep</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
castor oil
packs</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
homeopathy</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Epsom salt
baths</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
osteopathy</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Astragalus</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Frankincense
and Myrrh</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Blushberry</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Sunlight</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Low-dose
naltrexone (LDN)</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Iscador</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
Strodival
(ouabain)</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
gemmotherapy</div>
</li>
<li>
<div style="line-height: 100%; margin-bottom: 0in;">
marajuana/CBD
oil</div>
</li>
</ul>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
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<br />
Eirik: Main character, diagnosed with Hodgkins Disease in March
2020<br />
Judy: Me, the mom<br />
Ben: My husband<br />
Cait: 23-year-old sister<br />
Moira: almost-21-year-old sister<br />
Lauren: almost-18-year-old sister<br />
Rowan: 16-year-old sister<br />
Adelle: 8-year-old sister<br />
Jenny: my best friend, my kids’ godmother<br />
Uncle Doug: my brother who passed away from complications of
cancer June 8, 2018<br />
<br />
<br />
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<br />
<div style="line-height: 100%; margin-bottom: 0in;">
</div>
I read about this concept in an article recently, but I can’t
find it now, so I will do my best to explain it from memory. I wrote the bulk of this for my family to help them understand and empower them to advocate for their own needs.<br />
<div style="line-height: 100%; margin-bottom: 0in;">
The gist of it is
that you draw a small circle, and in that circle is the person who is
most affected by the crisis. In our case, that is Eirik. Then we
draw a second circle around the first one. That represents the
people who are closest to him, so that would be us, his immediate
family. The next ring contains those who are next closest to him -
extended family and his closest friends. Each successive ring of
people is more removed from the situation until you have total
strangers at the outside edge. When someone is upset, they can
complain to and seek support from anyone in a ring that is bigger
than theirs. So we can complain to friends and other family, they
can complain to their friends and they can complain to people who are
strangers to us. Eirik can complain to anyone he wants because
everyone is in a bigger circle than his. We may never complain to a
ring smaller than ours. Our job as an outer ring is to support and
comfort those in the smaller rings. So the rest of us (his immediate
family) can complain to anyone we want except to Eirik. No one in a
ring larger than ours is allowed to complain to us. They may only
offer support and comfort. Comfort in, complaints out. If other
people start complaining about it to us, we can tell them that it is
not our job to support them, and asking us to do so puts an
unnecessary burden on us. Our job is to support Eirik, not our
friends. Their job is to support us and if they need to complain,
they can complain to someone else. This may be important later on,
if our friends say something like, "It is so hard to see him go
through this," or anything similarly thoughtless. Like we don't
know how hard it is. I will likely get very sarcastic. I’m not
trying to sound cold, just trying to manage our energies.</div>
<div style="line-height: 100%; margin-bottom: 0in;">
<br />
</div>
<div style="line-height: 100%; margin-bottom: 0in;">
If you don’t know
what circle you are in, you are either in ring 4 or 5. Similarly,
this is the order in which we will share information as well. Once
all of Ring 3 knows, I will make this public.</div>
<br />
<br />
<br />
Center Ring: Eirik<br />
Ring 2: Immediate family<br />
Ring 3: Extended family (blood, marriage, and official honorary),
closest friends<br />
Ring 4: Church friends, SCA friends, work friends, classmates,
etc. that don’t spend lots of time with us, so pretty much everyone
else that we know<br />
Ring 5: People who don’t even know us<br />
<br />
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a:link { so-language: zxx }</style>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-22987028636173732642009-12-05T22:09:00.003-05:002009-12-05T22:34:06.189-05:00I am a phoenixOkay, so maybe that is a bit of a dramatic title, but it really fits my worldview right now. I'm recovering from a really low point in my life, and I find myself reborn from the ashes. I have started a program about inner work called <a href="http://www.site.beaconmama.com/">Be A Beacon</a>. It really came at the right time for me. <br /><br />We have moved into a much better living situation and are now exploring the opportunities that await us here. We lost our van a month after I blogged about it, so now we only have our little car. It makes traveling interesting, to say the least. We are looking to add a puppy or dog to our family, too. In our new neighborhood there is a family with children close to my own's ages, and they have a very similar parenting philosophy to ours, which is so delightful. It is a real blessing to speak to the mom and have her understand what I am talking about without having to go into lots of background explanation.<br /><br />I have been putting together a collection of my family's favorite recipes. I thought about converting this to a cooking blog, but I don't think that would really be such a great idea. I have too many other interests and things to talk about. <br /><br />We found a violin for Moira and she has started lessons at the public school. She started late in the school year so she has been getting private lessons, but she said her teacher thinks she is almost ready to join the rest of the ensemble. I never have to remind her to practice, just to practice things other than Mary Had a Little Lamb. It is her favorite. And Eirik is now going to preschool for speech therapy twice a week and riding the bus. Most days when he comes home again, he is asleep. Poor thing. <br /><br />I have found a renewed interest in genealogy (shh! don't tell my mother). I discovered it in college, and I got my mom hooked. She has been consistent with it these last 15 years, but it slipped out of my life as quickly as it slipped in, and now it is coming back a bit. <br /><br />My Geocities website died when Geocities died, and I didn't really care at the time. I still have all my files on my computer, so I didn't really lose anything. I found a new host today, so now I am trying to decide what exactly to do with it. I think I will make it multi-faceted. I will put my traditional astrology course back up, and I think I will put my recipes there, too. Maybe some how-to pages as well, and some documentation of various projects. Any requests?Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com18tag:blogger.com,1999:blog-16707406.post-4382527917450633852009-07-25T22:20:00.000-05:002009-07-25T22:21:27.229-05:00Fomenting Dissension to Save JobsThis was written by my brother who is an inmate in the NH State Prison. He asked my mother to send it to all the major newspapers in the state, so I am sharing it here, too, to help spread the word.<br /><br /><span> --------------------------</span><div><wbr><br />By Douglas Giddens<br /><br /><br />Recently the administrative staff at the New Hampshire State Prison, in an attempt to prevent further layoffs, has thrown the prison into chaos. By fomenting dissension and intentionally creating a dangerous and volatile atmosphere, they hope that the increase in violence can be used to support the claim that reducing the number of correctional officers is contrary to the smooth running of the institution and the rehabilitation of its inmates.<br /><br />During the week of June 15, eighty inmates were moved between units. The three units involved are Medium Custody North (MCN), Medium Custody South (MCS), and Hancock Building (H-Bldg).<br /><br />MCN and MCS are primarily long-term housing units populated predominately by prisoners who are sentenced to ten or more years, who have stayed disciplinary free.<br /><br />H-Bldg is a transitional housing unit dominated by prisoners who are new to the prison, transitioning back from a higher classification status, or who have not remained disciplinary free long enough to have earned one of the limited number of beds in MCN or MCS, or those who are participating in a residential treatment program, for which two of H-Bldg’s pods have been reserved.<br /><br />When prisoners enter NHSP, they live in R+D (Reception and Diagnostics) until they are classified by psychological criteria as Predators, Prey, or Neutral. Predators are those who are more likely to cause physical, mental, or emotional harm on others. Prey are those who are physically, mentally, or emotionally weak and more likely to be subjected to such harm. Neutrals are not seen as being especially predatory or especially susceptible to predators. In school, there were the bullies, the bullied, and those who were neither. This is the same principle.<br /><br />Once categorized, inmates are placed in appropriate housing units: Predators in MCN, Prey in MCS, and Neutrals in either one, often depending on the nature of their crime or the unit requested by the Neutral.<br /><br />In H-Bldg, these classified prisoners are placed on specific pods, again based on these same criteria (Echo pod for prey, Foxtrot for predators, and Neutrals on either). Over the previous week, NHSP administration has seen fit to disrupt this equilibrium within the prison community. They have taken 20 prisoners each from MCN and MCS and swapped them with prisoners from the most violent and volatile pod in H-Bldg: Foxtrot.<br /><br />Those chosen for this move from the long-term communities of MCN and MCS were not necessarily those who were problematic prisoners or disciplinary problems. Although some of these men were not model prisoners, they had not been in enough trouble to be expelled from these units under normal circumstances, and many of those moved were in fact model prisoners; men who had been disciplinary free for many years, who held steady jobs in the prison, and who were respectful to and respected by fellow prisoners and guards alike. Some of those moved didn’t have very much time left in prison and will soon be released. There were also those, however, who are serving long sentences with little hope of ever being released.<br /><br />The propaganda being spread by prison staff is contradictory and confusing. The answers given by some staff members differ greatly from those of others. Some say the idea was to move troublesome prisoners from earned units, but many among those moved were model prisoners. Some say it was to move short-term prisoners from long-term housing units, but many among those moved had little hope of ever being released. Some say that it was long-term, non-problematic prisoners to “teach the new young inmates how to do time”, but the variety of moved prisoners shows the fallacy of this reasoning. Some ranking prison officials suggest that the goal of all of this is to unify the prison so that there are no “good” units and no “bad” units, so that all live in relative harmony. This idea, however, is contrary to all psychological patterning and has been attempted before by this prison with disastrous results.<br /><br />The fact is that the moves were arbitrary. Model prisoners were whimsically moved for no better reason than that the Unit Managers felt like it. The whole idea behind these moves is to mix the predators with the prey and incite violence in an effort to justify the necessity of having so many unnecessary guards.<br /><br />Before these moves, the most problematic prisoners were consolidated on Foxtrot where correctional personnel were able to keep a close eye on them. This arrangement, keeping these men under close supervision, allowed officers to prevent many problems and intervene quickly when necessary. Since the moves, these most problematic prisoners have been distributed throughout the prison population and, without the needed supervision, they have been allowed free rein to extort, abuse, and steal.<br /><br />The first week alone saw more thefts and assaults than were perpetrated in the last six months in these units. The results speak for themselves; one prisoner who has had only one disciplinary infraction in 5 ½ years, and that 3 yrs ago, who is unlikely ever to be released, cut his wrists. He was found with massive blood loss over three hours later and was rushed to the hospital. Another prisoner was reassigned to Foxtrot where it was well know that he had enemies. Another man was attacked and brutally beaten by a group of gang members. These are only a few of many such incidents and, in addition, the prisoners were refused communication with mental health professionals who could have helped to ease this transition.<br /><br />Are the prison administrators such sadists that they would knowingly and willingly endanger the lives and safety of so many men? Are those charged with the safety of these prisoners so desperate to prevent layoffs that they would sacrifice so many lives to achieve this goal? Do we really want such ruthless and inhumane people in charge of the safety of our state prison population?</div>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-20103779601875703902009-03-24T06:24:00.002-05:002009-03-24T06:48:23.905-05:00Mmmm... GardensWell, we are forgetting about moving for now. It is very hard to find a place large enough for a family of 7 that falls in our price range of 1200+ utilities, AND that will accept Section 8 rental assistance. Most people's reasoning for not accepting Section 8 is that it won't pass the safety inspection. Why are they renting it out if they know it isn't safe? The one place that I was certain would pass (it had just been repainted - the biggest failure in the places we looked at) just flat out refused to consider it. I cried for a couple of days after that one. The house was perfect for us - 3-4 bedrooms, 1 1/4 bathrooms, full basement with W/D hookups and an area that was begging to be filled with shelves for food storage, a fenced in backyard, a formal dining room to fit our monstrous table, and still within easy biking distance of downtown on a dead end road. So yes, I cried. We have since given up on moving out of the project for now. They have also pushed back the start of construction here, so now instead of March 1, they are *hoping* to start by June 1st. The up side is that most of the people we truly don't get along with have either left or are on their way out. Having obnoxious neighbors is one thing, but believing they are dealing drugs in another matter entirely. I don't know why no one has been arrested over there yet, but I have been assured that they are being evicted and they agreed to it in court, so they can't change their minds now.<br /><br />All this leads up to this post. Since I am staying here, I can plan my garden for here. I got my seeds from <a href="http://www.highmowingseeds.com/">High Mowing Organic Seeds</a> (on <a href="http://sharonastyk.com/2007/01/08/where-to-buy-your-seeds-and-where-not-to/">Sharon's recommendation</a>) yesterday and have been planning and replanning my garden. I now have a schedule for my starts and plantings that I don't suspect I will change anymore. I had done a nice schedule based on our frost date and how long before that each plant is supposed to be started indoors. Then I saw <a href="http://fatguyonalittlebike.wordpress.com/2009/03/17/potpourri/">Matt </a>mention that he had done some planting based on moon phase, so I decided that I needed to schedule mine all over again. Now it all laid out on the little generic calendar I printed out for this purpose based on moon phase. That means I fudged a little on my frost date, but I dont' think that will be a significant issue. For example, one of my plants says to start indoors 5-7 weeks before the danger of frost has passed. The last frost date in my area happens to fall almost on the new moon in May, which is perfect for putting plants in the garden. Since I am not sure if the moon phase applies to starting seeds or putting them in the ground or both, I opted to start them inside 4 weeks before and and put them out on the new moon. The other option was direct seeding after frost. My first plants will be started this Friday. I panicked for a little while yesterday because I couldn't find the peas and lettuce seeds I had saved from last year. I hope they are viable, since I have never saved seed before. But I want to start my lettuce on Friday and I couldn't find the seeds! I searched everywhere I could imagine I might have put them. At the end of the day I found them packed up in a box labeled "Gardening stuff". Imagine that. :)<br /><br />Since I can't put much in the ground for two more months, I am sure my layout will still be changed up before then. But soon I will have little greenies growing in my house. Hopefully the cats will not try to eat them. Yay!Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-86255666327937919322009-01-14T11:54:00.002-05:002009-01-14T12:00:57.566-05:00About carsCrunchy Chicken <a href="http://www.thecrunchychicken.com/2009/01/bout-of-bad-gas.html">posted today</a> about whether higher gas prices are a good or bad thing.<br /><br />This is a tough one for us. Our "family car" is a 94 Chevy Astro van that we bought used 10 years ago. It gets about 20 mpg in the summer. At that time we planned on having a big family and would be needing the room. That indeed happened. We have 5 kids, so the 8 seats in the van definitely get utilized. At one point, we had 3 kids in car seats, though we are down to 2 now. We also have a 180-mile round trip every other week for visitations with my oldest daughter who lives with her father. This was murder on the pocketbook.<br /><br />Last year we used our tax refund to pay cash for a used 99 Mazda Protegé. The gas mileage (when it is only being used for the trip to get my daughter) is around 35 mpg in the summer. Winter is harder on the gas mileage since we have to leave vehicles to warm up (especially the van) before we go anywhere or else the cars complain.<br /><br />The Mazda only has 5 seats. It won't fit our whole family, so if we go anywhere as a family, we have to take the van. The van is going through some trials right now (over 200k miles on it), and we are trying to decide if we should keep putting money into it and hope it lasts as long as we can afford gas, or if we should replace it. But with what shall we replace it? Financing a $20k hybrid car is completely out of the realm of the most remote possibility. I suggested an old station wagon, the kind that has the extra back seat that flips up and faces backwards, but I haven't seen one of those in, well, probably decades. My husband suggested a small pickup truck. Yes, it would mean we have to take both vehicles to go somewhere as a family, but really, we don't make long distance trips as a family very often. He also said that when gasoline is prohibitively high, we can pull the engine out and convert it into a horse- or ox-drawn cart. I don't know how plausible that is, but it is intriguing. We shall await the prognosis on the van right now.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com4tag:blogger.com,1999:blog-16707406.post-82185973204137340672008-12-31T12:08:00.002-05:002008-12-31T12:27:17.157-05:00Christmas at our houseWe had a lovely Christmas this year. Our apartment is so small that we don't have room for a Christmas tree this year, so we got some poster board and I outlined a tree, then the kids colored it in. We hung it on the wall and taped some ornaments to it and it is lovely. It comes down today and will be put away in case we need it another year. We hung ornaments from the ceiling and strung lights around the walls at the ceiling, so our living room looked quite festive. Cait is spending Christmas vacation with us this year, part of a new agreement that now eliminates our being on the road on Christmas Day every year for the 4-hour round trip between houses. This is the first time since Terry started working this job that I have had both my husband and my daughter home on Christmas morning. He works on Christmas on odd-numbered years and doesn't get home until after 2, and on those years Cait would spend Christmas morning with us, but go back to her dad's at noon. So this was an exciting year for me.<br /><br />We even invited my mother over to spend the night Christmas Eve so she could be there first thing in the morning when the kids wanted to open their presents. By the time dinner at 2 rolled around, though, I think we all had had enough of each other. She left shortly after dinner to go visit my brother in Concord, and Terry and I heaved a sigh of relief. But the kids enjoyed her being there the whole time.<br /><br />We tried to keep Christmas simpler this year. I hand knit something for everyone, and we got them socks and underwear (which they desperately needed), Terry got them each a DVD, and in their stockings were a couple of candy canes, a new cocoa mug with some cocoa mix and a few hair ties. We also got each child one specific present: Cait got needle nose pliers for making jewelry, Moira got a sketchbook that she has been asking for for weeks, Lauren got a stuffed animal since we accidentally culled too many of their dolls, Rowan got a Magna-Doodle since she is always drawing and uses far more paper than I am comfortable with, and Eirik got a rocking horse. My mom gave them each an article of clothing and a book or two. Cait also made presents for everyone, too. Overall, they got what they needed and something they wanted. Next year, though, I want to spread the purchase of such items out over a longer period of time. Did you know that socks and underwear for 5 kids costs $72! One package of each for each one. Egads!<br /><br />We didn't overdo on confections, primarily due to our new diet, but I am making some decadent chocolate and coconut bars for tonight as New Year's Eve. We also get to get some of our baking fix by hosting our church's coffee hour this Sunday. Overall, it was a good holiday.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-42781206697840838662008-12-31T11:53:00.003-05:002008-12-31T12:07:56.210-05:00Making progressI see it has been over two weeks since I last posted anything here. Terry has an appointment for Monday for a physical and to go over the results of lab work he had done this past Monday. We have done a lot of reading about diabetes and insulin and blood sugar and are adjusting to a new diet. After doing some quick caluclations, we realized that he was consuming somewhere around 1000g carbs each day, 750 from soda alone. The USDA recommends 300g per day, and I know that is way higher than it needs to be. He is reading <span style="font-style: italic;">The Schwarzbein Principle</span> right now, and we have read <span style="font-style: italic;">Eat Fat, Lose Fat</span> and some articles by <a href="http://www.mercola.com/article/diabetes/index.htm">Dr. Mercola</a> and <a href="http://articles.mercola.com/sites/articles/archive/2001/07/14/insulin-part-one.aspx">Dr. Rosedale</a>. We are awaiting <span style="font-style: italic;">Life Without Bread</span> through interlibrary loan so it is next on the list. After just this short amount of time with no soda and cutting way back on carbs, his knee has mostly stopped bothering him and he isn't so grumpy. Other symptoms have dramatically reduced as well. I have high hopes. We do however have to buy him some new clothes. These last several months he has lost so much weight that his jeans are now 4" to big in the waist and his shirts are hanging on him. He just got these clothes last February and they fit him perfectly then. So now we just wait for his doctor visit and he wants to get a glucometer.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-35177873270556893902008-12-12T10:44:00.005-05:002008-12-12T11:29:29.356-05:00Health care and povertyI find that I have to post an update to my last post, to clarify our situation. I have gotten three responses so far, one was an offer of financial help to get treatment, one was encouragement to find a way to get help, and the third sounded like a scolding for not valuing my husband's life enough.<br /><br />After receiving the offer of a check from my friend in Europe, I was in tears from her generosity. I started calling around to find out what the total cost would be. When I called the local clinic/hospital's billing office for prices, she told me that they have multiple programs to help those without insurance. The first is a 30% uninsured discount. Secondly, they will work with you to come up with an affordable 0% interest payment plan. Thirdly, she sent me paperwork for up to a 100% income-based discount. She told me there was no need to let finances get in the way of getting help.<br /><br />But I still have another reason for hesitating to go to doctors. I don't trust them as far as I can throw them. The medical system in the United States is so broken due to corruption. I truly believe that the privatization of health care should be considered a crime against humanity. No one should ever be forced to choose between going to the doctor for a major illness like this and getting warm boots and snow pants for their children for the winter. Or, if it is expensive enough, food to feed their kids. The question is not, "How much is your husband's life worth?", but, "Why is anyone allowed to put a price on human life like insurance companies and drug companies are?"<br /><br />The medical system has fought against diabetes since the dawn of written history. Anthropologists use diabetes as a marker of civilization. It should therefore be obvious that going to the doctor will not take care of the diabetes. So why go to the doctor then? I do not believe in going to the doctor for treatment of disease. Doctors cannot cure. Doctors can diagnose and can monitor diseases, but they cannot cure them. Healing is done by the body, not by drugs. The only way to truly cure any disease is through proper nutrition (which varies widely depending on whom you talk to) and a careful, deliberate lifestyle. I am willing to go to the doctor for injuries, diagnoses and monitoring, but I will not take their drugs.<br /><br />Back to the comment though about valuing my husband's life. I have pretty much come to the conclusion that most people do not truly understand what it is like to live in poverty. To ever wonder where they will get groceries to feed their children next week. To be homeless. Remarkably, I was homeless when I first met the commenter nearly 20 years ago. Perhaps he didn't realize I was homeless. Most people have never worried about not having enough money for gas to visit their little girl who lives with her father nearly 100 miles away. These aren't the worries of the average US citizen. But we live these questions a few times a year every year. It is no fun having to call up your daughter to say, "I'm sorry, honey, but I can't come get you this weekend because we have to replace the tires on the car and then I won't be able to get gas, and I don't want us stuck on the side of the road when we run out."<br /><br />Poverty is alive and well in the United States but most are blind to it. Poverty is what makes us have to choose whether or not we can afford to go to the hospital for a diagnosis of a potentially-fatal disease. It isn't free will, it isn't apathy, it isn't that I don't love my husband with every ounce of my being and don't know how I could live without him. It is that it is a long and complicated and therefore expensive process, one that could very well require surgery (for ancient knee injuries that make it impossible for him to do much physical activity), and that means time lost from work, which means reduced income, which could mean that we have to ask those hard questions again. Doctor or food? What kind of a choice is that? One driven by poverty.<br /><br />So why don't I get a job? Again, this is a complicated question. At first blush it would seem the answer. First, we have several small children. Daycare costs alone for 4 children, 2 not yet old enough for school, would completely consume all of my potential income and more. A friend and I recently discussed how it might be possible for his wife to stay home with their baby. His baby is about 6 months old or so and he told me that daycare for her is $500 per month. That is one child. Now multiply that by 3 (full time for the two younger, part time for the two older) and that equals $1500 per month. That is more than I can hope to bring home in a paycheck, and is only a little less than my husband brings home. Sure, we could apply for state-funded child care, but that would be an extra $1500 or so burden on the state. Currently, we receive almost $600 in state aid as food stamps. Do you, the taxpayer, really want to replace that with $1500 that the state can't afford since it can't balance its budget?<br /><br />Secondly, my child support payment would go from $50 per month to about 25% of my take home pay. When I was working full time (which was until 5 years ago) I paid nearly $100 per week in child support. So that brings the cost of my working up to about $1900 per month. Still can't afford it.<br /><br />Thirdly, when I was working full time, our family life suffered terribly. The children were always cranky about having to go to a sitter, I was angry at society for not paying my husband a living wage and therefore requiring me to work when I wanted nothing more than to stay home with my children and be a mother. To keep the daycare costs down (though not completely eliminated) my husband and I worked separate shifts. That is hell on a marriage. We nearly got divorced. So quality of life is another cost of working away from home, though one that defies a price tag.<br /><br />We have a plan of action now, one that we worked out after the encouragement from my friends cleared my head so I could think more strategically. I am not letting him go without a fight. Never doubt that.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com1tag:blogger.com,1999:blog-16707406.post-90805843460623907262008-12-04T08:05:00.005-05:002008-12-12T11:27:34.382-05:00DiabetesAfter observing my husband's health for some time now, I have come to the conclusion that he has possibly full-blown diabetes. The trouble is that we can't afford the $200/month or more that health insurance would cost us. Why so high? Well, first, he works in the medical industry (a nursing home) which automatically puts his rate very high. Second, he opted out of all benefits in exchange for a 10% higher hourly wage; they call this modified compensation or mod comp. He is still eligible for some benefits and still keep his mod comp we have discovered, so starting in January we will get dental insurance for the two of us as well as eye coverage. The kids are already covered through Healthy Kids Gold, the state's low-income insurance plan for children only. Neither of us has had a dental checkup in over 5 years, when I left my job and we lost insurance through my employer. My husband is almost ready for reading glasses and I get headaches when I drive at night from what my mom says is astigmatism. I can't read road signs because they are so bright at night with the reflective paint that they smear all around and give me headaches. And my headaches hit not with pain, but sleepiness. For a long time I would routinely fall asleep behind the wheel after dark. When I had to be at work at 6 am in the middle of winter, I would allow myself an extra half hour of commute time so I could pull over and take a nap.<br /><br />Anyway, I digress. My husband's health has gotten to the point that last night I started googling the major issues he has and each one came back as a complication of diabetes. These last few months he has gotten serious about weight loss. To give an idea of the scope of what he is struggling with, my husband is 6'1" and weighed 500 pounds this past summer. That was his peak. He began drinking a smoothie containing coconut oil most mornings before going to work and with that simple addition alone has lost just over 70 pounds so far. That was without any other change in his diet and no increased exercise because his knees hurt him so badly that he cannot do anything more than walk, and unless it is an emergency, our two-year-old son walks faster than he does.<br /><br />After a huge argument we had recently he has given up soda. He is addicted to it and was drinking an average of about three 2-liter bottles each day. I tried to get him to quit by pointing out the financial burden of $100 per month for his soda habit - money that we could be using to build up our food reserves or towards a down payment for some land. I tried pointing out the health effects of soda, both regular and diet, but he just chose the lesser of two evils - HCFS over aspartame. I tried complaining about the amount of trash it generated, so he started bagging up the bottles to take to his friend who turns them in for the bottle deposits. Finally I had to tell him that he had to choose between the soda and me. It wasn't pretty. I told him I cannot watch him die slowly by his own hand. He snapped back that you can die just by walking down the street, and I said that yes, that is possible, but at least then you are living each day instead of dying each day. He then stomped downstairs and poured the bottle of Mountain Dew he had just bought and poured it down the tub and hoped I was happy. It wasn't until my dear <a href="http://enthymeme.livejournal.com">Jenny</a> pointed out that he was exhibiting classic addiction behavior that I had the courage to fight with him like this.<br /><br />I am very proud of my husband for giving up soda. He has tried many times before and failed. It has been about three weeks now, I think. He has gotten some organic soda, but they are $4 for 6 cans, so he gets one or two a week. I can accept that. I am hoping that this will set him more firmly on the road to good health.<br /><br />Now I now must find a way to feed him. We believe strongly in local eating as much as possible, and we also believe strongly in a diet rich with animal products as promoted by the <a href="http://www.westonaprice.org">Weston A. Price Foundation</a>. They recommend a <a href="http://www.westonaprice.org/moderndiseases/diabetes.html">low carbohydrate diet</a> (60-70 grams per day) for those with diabetes in order to help bring the pancreas back to health and promote weight loss. Sounds great. But that means that he can't eat all the wheat, rice, potatoes and carrots that I have stored for our winter reserves. Mind you, I don't have a lot stored, as I have been slowly building my reserves and didn't start until just a few months ago, but we have enough to feed us (somewhat monotonously perhaps) for a couple of weeks as long as we still have access to fresh milk and eggs in the case of an emergency. We buy our milk locally and they also sell eggs, so I have no fear of losing our supply of those. I far more fear the supermarket shelves running empty in the next few months as lack of credit prevents supermarkets from making their purchases and prevents food from getting shipped.<br /><br />But how do I feed my husband now? The local winter foods here are beans, starchy vegetables and grains, with some salad greens if they are grown with season extension techniques. I can't imagine beef stew without carrots and potatoes, chili without rice, casseroles without starches. Whoever heard of a casserole that didn't have pasta, potatoes, or some kind of wheat-based crust? I have to completely re-examine all my options.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com2tag:blogger.com,1999:blog-16707406.post-83892363135467228592008-12-02T12:34:00.000-05:002008-12-02T12:36:18.245-05:00Christmas treesMy mother remarked that it has been a while since I last posted, and I suppose she is right. Right now I am crazy knitting, trying to finish the last of my Christmas presents before, well, it was supposed to be before Dec. 1, but that has come and gone because I was playing World of Warcraft too much. So now I am hoping to be done by the 15th or 20th. I just don’t want to be knitting on Christmas Eve. I have also been busy house hunting since we would like to be able to move right after Christmas. Finding 4-bedroom houses for rent is not easy.<br /><br />I thought today I would talk about Christmas trees. A week or so ago, I was driving with the kids downtown and the fire department was putting lights on the big tree in the square. Rowan remarked that it was the same tree they decorated last year. I agreed and said that was the best thing to do. Which got me thinking about the tradition of Christmas trees. <br /><br />I hate fake Christmas trees. I deplore them. They don’t smell good, they are a pain to put together, and I consider them a waste of resources. But a real Christmas tree has been cut down at a time in history when we need all the living trees we can get. No, I am not naïve enough to think that it contributes to deforestation, because I have been to a Christmas tree farm and cut my own before. But how good is it for the soil to keep replanting Christmas trees each year? Our soil is depleting at a terrible rate and we need to build it up, not strip it further. I have done no research on the soil necessities of Christmas trees, so I don’t know exactly what the burden of a Christmas tree farm is. But I do know that we have no way to make use of the tree after Christmas. We have no woodstove in which to burn it for heat, we have no compost pile in which to rot it for soil. The only thing we can do in our city apartment is to take it to the dump. They will probably burn it there, but that fire doesn’t benefit anyone by keeping them warm. It only makes room for more brush. <br /><br />This year we have talked with the kids and decided to forgo a Christmas tree this year. We will hang the lights around the rooms downstairs and hang the ornaments from the ceiling where toddlers and kitties can’t reach them. It helps when proposing such a thing to one’s children to point out that Laura and Mary Ingalls didn’t even see a Christmas tree until they were almost teenagers and they never had one in their house. The children wanted to know where Santa would leave the presents and so that is one thing we are still working on. Laura and Mary got their presents in their stockings. That is an option if we can find a place to actually hang their stockings. We usually leave them on the ends of their beds since we have no mantle. I am not leaving all the kids’ presents on their beds for them to open before we adults even wake up. We will figure something out in the next three weeks.<br /><br />Yikes! Only three weeks? I have to go back to my knitting. I still have a pair of socks to make. I will try to post again soon.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-54077191481781314752008-11-02T16:19:00.002-05:002008-11-02T16:22:31.237-05:00OfflineI am embarking on Pioneer Week tomorrow and am thus swearing off the computer. Go check out Crunchy's challenge by clicking on the banner to the right and join us. I will see you in a week.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-57139852177908004772008-10-31T20:03:00.003-05:002008-10-31T20:31:15.549-05:0027 in 33By the time I turn 33 in March, I will have moved 27 times. And I have spent multiple years in multiple houses. My first move was when I was 4½ years old, so really it will be 27 times in 29 years. Moving sucks. So why am I moving again? Because I have to. We don't exactly think this place is paradise (far from it), but we had hoped on staying until we could move onto our own land so we would never have to move again. Alas, the housing authority has to upgrade everything in order to change the way they are funded since their current funding is going away. They are switching from subsidized rents to Section 8, which is a program that provides housing vouchers for those who are eligible. There is lots of good news about this.<br /><ul><li>The HA is paying for all costs associated with the move, including movers. I have never had movers help before. This will be delightful. </li><li>The HA will help us find a place to go. Extra eyes scouring the For Rent ads will be useful, and I am sure the HA has connections to local landlords.</li><li>We can finally get out of the projects and not have to listen to "He-ey!" all day or threats of violence at 11:00 at night.</li><li>Occupancy laws require them to find us at least a 4 bedroom dwelling, "even if that means we have to put you in a house." Oh, twist my arm.</li><li>We can go anywhere within the HA's jurisdiction, which is a pretty generous area -- this entire county plus part of the neighboring county. I would like to get back to the towns near where we have family.</li><li>Moving in March will allow me to still have a garden since I won't have put a lot of work into a garden just to leave it behind when we move.</li><li>Did I mention we get movers for free?</li></ul>The down side is that we do have to move again. They are remodeling one building at a time, moving everyone out of each building and trying to keep them as close as possible so as to disrupt lives as little as possible. There is no building-by-building timetable yet, but construction begins March 1. There are 220 households affected and we will all be switched to Section 8 at that time. I'm not waiting for them to get to my building. We will go in March so as to have a chance to settle in to our new place before starting in on the garden. Fortunately, homeschooling means there will be no disruption for the kids on that front. No changing of schools part way through the year.<br /><br />I have five months to declutter. Five months to decide what we will keep and what will be gotten rid of. Even with movers helping (which would have been nice for either of the two moves we made while I was 7 months pregnant), I want to pack as little as possible. I have five months to imagine what our new place will be like. I have five months to mentally gear up for yet another move. I don't think I've ever had that long before.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com0tag:blogger.com,1999:blog-16707406.post-23032839855350033142008-10-21T13:09:00.002-05:002008-10-21T13:15:16.186-05:00BibliomaniaMy best bud posted this at her site, so i thought I would join in. <br /> * Grab the nearest book. <br />* Open the book to page 56.<br />* Find the fifth sentence.<br />* Post the text of the sentence in your journal along with these instructions.<br />* Don't dig for your favorite book, the cool book, or the intellectual one: pick the CLOSEST.<br /><br />"John and Barbara gurgled from their perambulator."<br /><br />I had to hunt under the piles of papers threatening to fall off my desk to find a book. Turns out I had rescued a small pile of books from destruction by the boy (who turned 2 today). The books in the pile are Mary Poppins (on top) and two Hardy Boys books from when I was a kid, The Flickering Torch Mystery and The Mystery of Cabin Island.<br /><br />What about you? Feel free to post it in the comments.Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com2tag:blogger.com,1999:blog-16707406.post-50962142287888255652008-10-14T13:54:00.005-05:002008-10-14T14:11:00.490-05:00Some thoughts on religion in our countryMy brother-in-law forwarded this to me today. He often forwards me many posts about loving God and how we as a nation should embrace our love of God. I love my brother-in-law dearly, but usually these posts leave me saddened that others feel that they need to force their Godness on others, rather than speaking to the more universal aspects of Christianity. But this post was different. Instead of feeling battered about by a Bible, I felt a call for religious tolerance. Maybe that wasn't the point of the post, but it is what I came away with. I am not a Christian. I am a Unitarian Universalist, and the UU religion is based on support of diversity of beliefs. I personally feel most comfortable with Earth-based creeds, and the UU faith encourages me to follow that. I love my faith because I feel that it demands that we follow our religion and develop our spirituality, regardless of what specific doctrine and path to spirituality we choose. I think this post touches on that.<br /><br />I wish that America could find a middle ground, one that allows everyone to feel welcome, be they fundamentalist Christian or devout Pagan or decidedly atheist. Our country was supposedly based on religious freedom (not really, the Puritans were anything but religiously tolerant), and yet we have become a bizarre mix of fundamental Christian and Atheist. There is a middle ground. Just because one person wants to do something doesn't mean they are going to try to force you to do the same. I do not believe prayer or Bibles (or any other religious trapping) should be required in school, but I also don't believe they should be banished from school either. I think prayer groups for students are fine, since anyone who wants to can go and if they don't want to, they don't have to. I am even fine with the school permitting use of their space for such a group and for other groups of differing religions.<br /><br />Okay, on to the post from my brother-in-law:<br /><br />Remarks from CBS <span class="yshortcuts" id="lw_1223481541_0" style="border-bottom: 1px dashed rgb(0, 102, 204);">Sunday Morning</span> (everyone should read!)<br /><br />I o<span style=";font-family:Arial;font-size:85%;color:black;" ><span style=";font-family:Arial;font-size:10;color:black;" >nly hope we find God again before it is too late!!</span></span><span style="color:black;"><span style="color:black;"><br /></span></span><span style=";font-family:Arial;color:black;" ><span style=";font-family:Arial;color:black;" ><br /></span></span><b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style="font-weight: bold;font-family:Tahoma;font-size:10;color:black;" ><br /><img id="_x0000_i1025" title="image001.jpg" alt="image001.jpg" src="mailbox:///C%7C/Documents%20and%20Settings/Compaq_Administrator/Application%20Data/Thunderbird/Profiles/rip1q4tp.default/Mail/Local%20Folders/Inbox?number=28059486&part=1.2.1.1.1.1.2&filename=image001.jpg" width="320" align="bottom" border="0" height="240" /><br /><i><span style="font-style: italic;"><br />The following was written by <span class="yshortcuts" id="lw_1223481541_1">Ben Stein</span> and recited by him on CBS <span class="yshortcuts" id="lw_1223481541_2" style="border-bottom: 1px dashed rgb(0, 102, 204); background: transparent none repeat scroll 0% 50%; -moz-background-clip: -moz-initial; -moz-background-origin: -moz-initial; -moz-background-inline-policy: -moz-initial;">Sunday Morning</span></span></i></span></span></b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style=";font-family:Tahoma;font-size:10;color:black;" ><br /><br /><b><i><span style="font-weight: bold; font-style: italic;"><br />Commentary.</span></i></b><i><span style="font-style: italic;"><br /></span></i><b><span style="font-weight: bold;"><br />My confession:</span></b><br /><b><span style="font-weight: bold;"><br />I am a Jew, and every single one of my ancestors was Jewish. And it does not bother me even a little bit when people call those beautiful lit up, bejeweled trees, <span class="yshortcuts" id="lw_1223481541_3">Christmas trees</span>.. I don't feel threatened. I don't feel discriminated against. That's what they are: <span class="yshortcuts" id="lw_1223481541_4">Christmas trees</span>.</span></b><br /><b><span style="font-weight: bold;"><br />It doesn't bother me a bit when people say, 'Merry Christmas' to me. I don't think they are sl ighting me or getting ready to put me in a ghetto. In fact, I kind of like it It shows that we are all brothers and sisters celebrating this happy time of year. It doesn't bother me at all that there is a <span class="yshortcuts" id="lw_1223481541_5">manger scene</span> on display at a key intersection near my beach house in Malibu . If people want a creche, it's just as fine with me as is the Menorah a few hundred yards away.</span></b><br /><b><span style="font-weight: bold;"><br />I don't like getting pushed around for being a Jew, and I don't think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can't find it in the <span class="yshortcuts" id="lw_1223481541_6">Constitution</span> and I don't like it being shoved down my throat.</span></b><br /><b><span style="font-weight: bold;"><br />Or maybe I can put it another way: where did the idea come from that we should worship celebrities and we aren't allowed to worship God as we understand Him? I guess that's a sign that I'm getting old, too. But there are a lot of us who are wondering where these celebrities came from and where the America we knew went to.</span></b></span></span><span style="color:black;"><span style="color:black;"><br /></span></span><b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style="font-weight: bold;font-family:Tahoma;font-size:10;color:black;" ><br />In light of the many jokes we send to one another for a laugh, this is a little different: This is not intended to be a joke; it's not funny, it's intended to get you thinking.</span></span></b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style=";font-family:Tahoma;font-size:10;color:black;" ><br /><b><span style="font-weight: bold;"><br />Billy Graham's daughter was interviewed on the Early Show and <span class="yshortcuts" id="lw_1223481541_7" style="border-bottom: 1px dashed rgb(0, 102, 204);">Jane Clayson</span> asked her 'How could God let something like this happen?' (regarding Katrina) Anne Graham gave an extremely profound and insightful response. She said, 'I believe God is deeply saddened by this, just as we are, but for years we've been telling God to get out of our schools, to get out of our government and to get out of our lives. And being the gentleman He is, I believe He has calmly backed out. How can we expect God to give us His blessing and His protection if we demand He leave us alone?'</span></b><br /><b><span style="font-weight: bold;"><br />In light of recent events... terrorists attack, school shootings, etc. I think it started when Madeleine Murray O'Hare (she was murdered, her body found a few years ago) complained she didn't want prayer in our schools, and we said OK. Then someone said you better not read the Bible in school. The Bible says thou shalt not kill, thou shalt not steal, and love your neighbor as yourself. And we said OK.</span></b><br /><b><span style="font-weight: bold;"><br />Then <span class="yshortcuts" id="lw_1223481541_8">Dr. Benjamin Spock</span> said we shouldn't spank our children when they misbehave because their little personalities would be warped and we might damage their self-esteem (Dr Spock's son committed suicide). We said an expert should know what he's talking about. And we said OK.</span></b><br /><b><span style="font-weight: bold;"><br />Now we're asking ourselves why our children have no conscience, why they don't know right from wrong, and why it doesn't bother them to kill strangers, their classmates, and themselves.</span></b><br /><b><span style="font-weight: bold;"><br />Probably, if we think about it long and hard enough, we can figure it out. I think it has a great deal to do with 'WE REAP WHAT WE SOW.'</span></b><br /><b><span style="font-weight: bold;"><br />Funny how simple it is for people to trash God and then wonder why the world's going to hell Funny how we believe what the newspapers say, but question what the Bible says. Funny how you can send 'jokes' through e-mail and they spread like wildfire but when you start sending messages regarding the Lord, people think twice about sharing. Funny how lewd, crude, vulgar and obscene articles pass freely through cyberspace, but public discussion of God is suppressed in the school and workplace.</span></b><br /></span></span><b><span style=";font-family:Tahoma;font-size:85%;color:red;" ><span style="font-weight: bold;font-family:Tahoma;font-size:10;color:red;" ><br />Are you laughing yet?</span></span></b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style=";font-family:Tahoma;font-size:10;color:black;" ><br /><b><span style="font-weight: bold;"><br />Funny how when you forward this message, you will not send it to many on</span></b><br /><br /><b><span style="font-weight: bold;"><br />your address list because you're not sure what they believe, or what they</span></b><br /><br /><b><span style="font-weight: bold;"><br />will think of you for sending it.</span></b><br /></span></span><b><span style=";font-family:Tahoma;font-size:85%;color:red;" ><span style="font-weight: bold;font-family:Tahoma;font-size:10;color:red;" ><br />Funny how we can be more worried about what other people think of us than what God thinks of us.</span></span></b><span style=";font-family:Tahoma;font-size:85%;color:red;" ><span style=";font-family:Tahoma;font-size:10;color:red;" ><br /></span></span><b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style="font-weight: bold;font-family:Tahoma;font-size:10;color:black;" ><br />Pass it on if you think it has merit. If not then just discard it... no one will know you did. But, if you discard this thought process, don't sit back and complain about what bad shape the world is in. </span></span></b><span style=";font-family:Tahoma;font-size:85%;color:black;" ><span style=";font-family:Tahoma;font-size:10;color:black;" ><br /><br /><b><span style="font-weight: bold;"><br /><i><span style="font-style: italic;"><br />My Best Regards, Honestly and respectfully,</span></i></span></b><br /><br /></span></span><b><i><span style=";font-family:Tahoma;color:black;" ><span style="font-weight: bold; font-style: italic;font-family:Tahoma;color:black;" ><br />Ben Stein </span></span></i></b><span style="color:black;"><span style="color:black;"><br /><br /></span></span>Segwynehttp://www.blogger.com/profile/05873358471387012353noreply@blogger.com2