Days 974 - 975
Thursday Aug 31st - Friday September 1st, 2006
Days 976 - 978
Saturday September 2nd - Monday September 4th, 2006
Day 979
Tuesday September 5th, 2006
Days 979 - 983
Wednesday September 6th - Sunday September 10th, 2006
Day 984
Monday September 11th 2006
Days 985 - 987
Tuesday September 12th - Thursday September 14th, 2006
Days 988 - 990
Friday September 15th - Sunday September 17th, 2006
Days 991 - 992
Monday September 18th - Tuesday September 19th, 2006
Day 993
Wednesday September 20th, 2006
Day 994
Thursday September 21st, 2006
Days 995 - 997
Friday September 22nd - Sunday September 23rd, 2006
Day 998
Monday September 25th, 2006
Day 999
Tuesday September 26th, 2006
Day 1000
Wednesday September 27th, 2006
Days 1001 - 1003
Thursday - Saturday, September 28th - 30th, 2006
Pam and I have both managed to work ourselves up to a point of being completely stressed out.
Not knowing what, if anything, is being planned ... the waiting .. the unanswered emails and phone calls ... we are
way passed being patient ... and are into the realm of being pissed off upset !
Thursday James stayed in bed sleeping for most of the day, Friday he did get up and went for a walk
but had the chills and nausea when he got home and went back to bed.
We are starting the "bad time of the year" for James, during the summer, the weather is nice, Aaron is home
quite a bit, the boys play compter games, go shopping etc ... now nobody is home, James is there alone,
pretty much staying in bed .. thinking about who knows what ...
We finally connected with the doctors Friday afternoon ... at this point surgery is out,
which is fine as I wasn't very keen on the idea anyway ... having said that, I have asked Boston to chime in for a second opinion.
The Radiation Therapst has reviewed the scans and believes he can do radiation (supposedly they have a new "latest and greatest"
machine). Many if not all of the details still need to be worked out, we are hoping to get a meeting scheduled
for early next week, I guess at this point I would be surprised if the actual therapy was started prior
to Monday, September 11th.
The plan for the big Labor Day holiday weekend was to get James "engaged", get him out doing something fun. We started off slow
... a trip to Costco ... some food samples, check out the latest big screent TV's ... not real thrilling
but something to get him out of the house. I'm not sure how it happened but on the way back to the car
he twisted his ankle, its really unbelievable how sh#%t happens. Saturday and Sunday he could barely walk,
by Monday it was bit better, still sore but at least he could move around on it. Needless to say
the weekend didn't work out as we had hoped.
The one positive thing about the weekend was we didn't stress over phone calls, appointments that needed
be made or worry much over the crazy week ahead ... we'll leave that for Tuesday morning.
James had a pretty good day ... actually now that I think about it .. he was naseous, threw-up, felt jittery ...
but his ankle felt better !! What a freakin mess.
My pessimistic prediction of not getting radiation started until next week was apparently optimistic ... James'
initial consultation is not scheduled until next Monday afternoon (4 1/2 weeks after his Positive PET scan)
seems like a long time to me ... maybe its not ?? The frustration continues ....
As usual, the last few days have been up and down.
Although James continues to have his share of aches and pains, the good times seem to be out weighing the bad.
James started what he hopes turns into a teachers assistant job in an Electroics Art class at the High School.
Pam and I, as is James, are really excited ... this could be exactly what James needs.
Friday night was really nice ... mid 70's .. it was awesome .. James, Pam and I went out and walked around downtown
and then had dinner out on Church street. Saturday and Sunday he did some shopping, went a visited some friends
and then went out to the moives on Sunday night.
Although we never look forward to Mondays, tomorrow starts what will probably be a pretty hecktic week.
Its going to be a long day as we wait for James' afternoon meeting with the radiation therapist.
Todays meeting with the radiation oncologist was very interesting, alot of information ... all of which was presented thoroughly and
thoughtfully. As always, when dealing with an known type of cancer, it complicates everything.
Many chemotherapies can have dramatic effects on your blood : plateletts, white and red cells.
James has had more blood transfusions and been neutropenic more times than we care to count.
A persons bone marrow plays a huge role in returning your blood to normal levels. One of the
few long lasting side effects of radiation is that it damages the bone marrow, inhibiting its ability
to "replenish" the critical blood cells. This becomes a huge issue if the radiation does not cure
the patient and they require further chemo, by limiting the options and eliminating those therapies
that effect cell counts.
James was cleary scared and mentioned that radiation was not something he wanted to do.
It is still unclear as to what we are going to do.
James' pain has been on the increase the last few days and is becoming difficult to manage.
We are currently trying to "communicate" with the doc's to try and get a new plan as
our current recipe is not working.
Thursday was "sim" day, James went in and was scanned and tattooed in preperation for radiation.
Although all of the research is not complete, "there appears to be a strong consensus to go ahead with fairly comprehensive radiation therapy treatment, to essentially treat everywhere that James has had disease.
The current plan has the radiation, which will be daily for 5-6 weeks, to start on Monday September 25th.
We can only hope that better days are ahead, the last few days have not been kind to James.
More of the same ... James' body is still not functioning very well. Another change to his meds
seems to be helping his pain but his plumbing is totally out of wack, he's still throwing up and feeling like crap.
He has spent the last two days in bed.
James showed a bit of life today, after waking up around 11:30am he went for a walk and had his haircut, had some lunch
and went to the High School. It was good to see him get out of bed and out of the house ... even though he is in
a self proclaimed "slump". After and late nap he played some "Madden 07" with Aaron on his Xbox 360 and
had a visit from his friend Davin.
After presenting James' case to the FAHC Tumor Board, it was confirmed that the current treatment plan
of radiation is the right thing to do. James goes in on Friday for another "mapping" as they
have decided to expand the area of radiation to encompass every lymph node that has ever
been PET positive. Radiation is scheduled to
start on Monday the 25th.
James woke up today with some lower abdominal pain but was excited to get going and head off to school.
James is really enjoying being a TA, its probably the only thing he gets satisfaction from
and gets to feel good about himself.
About 2:30pm I got a call ... James need to be picked up, apparently he went to the bathroom
and had pain in his kidney and bladder ... he also had blood in his urine which scared him abit and got him
very anxious. I feel so bad for James, its just no way to live.
James had his final "sim" done on Friday in preperation for his radiation therapy, besides that
is was really not a great day, basically another day of dealing with pain and feeling like crap.
Saturday was a much better day (for reasons unknown) he actually felt "ok". James and Pam spent the
day together (Aaron and I were out golfing) they did some shopping, etc.
Sunday was not as good as Saturday but there were no major issues. James is starting to get a little anxious as Monday and the start of radiation nears.
From what I understand, the positive effects of radiation (as related to disease control) generally happens pretty quickly
so we are hoping ... with any luck ... that James starts to feel better in short time.
Radiation Therapy - Day 1
Wow !!! what a rough day,
for some reason James was very disoriented this morning. He got sick 5-6 times today,
the first time was in the parking garage of the hospital, and this was before the radiation and then again on the way home.
Although each treatment is supposed to quick, todays visit took over an hour.
Anxienty and emotions ran high all day and the night was sad and tearful, it was not a great start
to the new treatment regimen.
Todays therapy (which will run 5 days a week through Nov 1st) was at 7:30am.
After the radiation we met with the doctor who showed us some computer
generated graphics that outlined the treatment area. When dealing with
radiation there are two things to consider, volume and dose. James is receiving
a "moderate to high dose" across an area that is "bigger than most patients".
The meeting was a little difficult as James was very uncomfortable as he was reeling in pain.
For the rest of the day it was all about pain control, James' stomach started to ache
an hour or so after comming home (radiation side effect ???) and his back was killing him (original "cancer pain").
He's either on pain meds and sleeping or awake and very uncomfortable.
The sad existence that is James' life continues to way heavy on our hearts.
We can only hope that the radiation therapy starts to work as soon as possible.
Today marks an anniversary of sorts ... Its been 1000 days since James first started suffering with lower back pain,
so much has happend since then ... yet here he is still struggling with issues, many of them the same as 1000 days ago,
I guess "living with cancer" is better than the alternative.
To highlight the positive .. James had a couple of hours yesterday that the pain meds were effective and he was able
to "relax" a bit and watch some TV while being fairly comfortable ...
There hasn't been much positive progress made over the past 3 days, we have those few moments or events
that make us believe we are turning the corner ... it just never pans out.
Thursday evening James was feeling a bit better, to try and capitalize on this I suggested
that I would take Friday afternoon off and that we would go see a movie. This seemed to work, he got the paper out, started
checking movie reviews on-line, there was a hint of excitment in the air. Friday came and so did his nausea, he just didn't feel
well enough to go the movies ... instead I went to the grocery store to pick up some new prescriptions, did some shopping
and picked up a DVD for James and I to watch ... it wasn't what we had hoped but we tried to make the most of it.
Another potential break came on Saturday, James was feeling ok, it was a nice day so James and Pam decide to try and go
for a walk. Another great idea goes down in flames ... James returned home in a ton of pain ... time to load up on the
narcotics ... oh, are these supposed to be for James, Damm !! ...
We met with the radiaiton oncologists after Thursday's and Friday's treatments to try and figure out whats behind
James' symptoms,
as usual, its not clear.
The nausea (which is worse than expected - he got sick in bed twice over the weekend)
and the new pain in his groin, along with his "normal" back pain (which we had hoped would be "fixed" with this radiation)
is getting very old.
The current strategy is more drugs, he's got over 10 medications going,
some once a day, some twice and some 3 times a day ... you need a frekin spread sheet to keep them all in order.
Link to October 2006