It's been exactly one month since the last update and I apologize to those of you who
check frequently for the updates. Frankly, it was nice (especially during the Holidays)
to walk away from the web site and everything it represents if even for a short time.
Briefly, the Holidays were a great time for the Roth and Parsons families. Deb was
feeling good and Tanner was very excited for his second Christmas. He was tuned in
this year and couldn't get enough of "Anta" or as you and I know him "Santa". It was
the first time in a year that we simply relaxed and placed our worries behind us.
Well, the holidays are over and it's time to get back to business. Sorry for the abrupt
reality check...read on - The past few days have presented Deb with some pressure in
her head and this morning was one of her worst headaches in months. UCSF has
been kept aware of these issues and has not felt the need to bring Deb in based on
what we are reporting. It just so happens that tomorrow (01/05/05) will be at UCSF for
a Spectroscopy with a follow up visit scheduled for this Friday (01/07/05). These are
timely visits indeed. As of this writing (4:30 p.m.) Deb is up and about with no pressure
Days such as today are difficult. We have seen so much progress over the past few
months that it has been easy to lull ourselves into a false sense of complete victory. I'm
not saying that we aren't winning this battle but until the report comes that the tumor
has disappeared it's always important to keep your guard in place. As our surgeon told
us at the beginning this is a "medical triathlon" that Deb is now running and there will
be ups and downs along the race. To forget that there will be "downs" only makes
them tougher to handle when they come. Make sense? The last few days have
brought our focus back to the race and we are now getting ready for the next couple of
miles which we will run this week. Corny analogy? Sorry!
I know those of you reading this care very much for Deb. Therefore, I want to convey
that my primary goal for constructing this web site was to keep you up to date on Deb's
current state. I think it's only fair considering that you are like family to us. Over time a
second goal has emerged and I want to make sure you are aware of it. The second
goal is to provide those who may be at the beginning of this "process" (especially
caregivers) somewhat of a journal and a resource to use in getting started. Personally,
upon our return from the hospital after the initial surgery I was all over the Internet
looking for resources and stories of others who had faced what Debbie was about to.
Finding these resources were a great help. I think it's important to for those reading
this as a resource to get a real feel for what we are going through and perhaps what
they can expect.
Why am I telling you this? I'm telling you this because I want you to know that I'm going
to write about the reality of our experience in order to make this site one in which
others dealing with a brain tumor may be able to identify with and gain insight and
strength from. Knowing how close you are to Deb I don't want you to get down if my
entry isn't the greatest news we could hear. This is a long process and there will be
many hurdles and tough days. As always we deal with them as they come. We live a
day at a time and we ALWAYS remain positive that a setback is simply another hurdle
on the way to completing the triathlon. I hope you don't find this off the wall. The fact is
that I have had a couple of people just starting the "battle" discover Deb's site and it's
made a difference to them. Knowing that, I want to make sure it remains "real" as I
know they will be reading my entries.
I'll be back next Saturday to bring you the latest news.
Where to start...it's been along day and it's now late but I wanted to post this so all
would know what's happening with Deb. As you know we were scheduled to go to
UCSF tomorrow for the results of the Spectroscopy that was done yesterday. I was at
the office today and called home to check messages - there was a call from UCSF. I'll
tell you now that when a doctor calls you the day after a test it's not because they want
to thank you for being their patient. I knew that before I returned the call.
The MRI portion of the Spectroscopy revealed a cyst growing somewhere within the
original tumor area. This cyst is encroaching the left ventricle and cutting off the ability
for the fluid produced in the brain to drain into the spinal cord. This is the exact
complication we experienced before the initial surgery and unfortunately it will require
surgery once again. This would explain the pressure that Deb has been feeling lately. I
spoke with our surgeon today and he was pretty adamant about getting Deb into UCSF
The process of getting Deb into UCSF started today and it looks as if she will be
admitted tomorrow. My limited understanding at this time is that we will be admitted,
more MRI's will be performed, we will meet with the surgeon to discuss the game plan
and the surgery will be performed. My guess will be either Sunday or Monday. The
details and the exact location of this cyst are still a bit blurry as I only found out a small
amount of information during our phone conversation. I probably couldn't have taken
in any more information anyways. I think I shut down after I heard that surgery was
required. We will know the whole story tomorrow.
Perhaps at some point I might try and describe the ramifications of such a surgery;
Deb's first days after the surgery - that's a story in itself with ICU being no fun, the
immediate effects and stress on the families, the true recovery time for not just Deb but
all those closely involved with her care, Deb's medications and the eventual period of
reducing the doses to get off them; the side effects. Working (trying to focus on work)
to pay the bills and now the issue of how we deal with Tanner who is much more aware
of situations than the last time we all went through this. I swear he knows what's going
on as tonight was the first time Deb and I had seen him so fussy at bed time. We had
to go in and comfort him and he insisted on seeing both "mama" and "dada". This
description really only begins to scratch the surface and it's coming back to me as I
write this. It really is heavy stuff.
Here is the bottom line. We have reached a hurdle. Deb will undergo the surgery and
she will come out of it fine. We have talked a lot this evening and we are convinced
that's the case. Let me tell you that this family will be incredibly strong after the entire
experience has passed and Deb is cancer free. I'll be completely gray but that's
another story. We are blessed by an extraordinary amount of support and let me add
we realize that and don't take it for granted. Deb will be fine.
I'm guessing we will be at UCSF for around seven days. I didn't make it home the last
time we did this and I'm not sure if I will this time so I won't be adding any updates.
Fortunately we have Sue and I'll ask her to keep you all current via her email updates.
I look forward to being back home with Deb and Tanner and updating the site once
Well here we are....back home. Let me start this entry by first restating the fact that
Deb is an absolute SuperWoman. I don't mean that she is simply a super woman -
which of course she is. I mean that Deb has the strength and power of that gal who
used to fly around in the invisible plane and ricochet bullets off her wrists as if she was
swatting flies. Does anybody know who I'm referring to? No matter if you don't - just
take my word that Debbie is one strong woman.
We checked into UCSF on Friday and her surgery was Monday. Originally, the surgery
was scheduled for Monday evening between 5 - 8 p.m. Let me tell you, when you are
having surgery of this magnitude it stinks to have it scheduled for the evening because
you sit around all day anticipating the time that the gurney will come and take you
away. Alas, the luck of the Roth's prevailed once again. Bright and early Monday
morning our nurse bust into our room and announced the surgery was on - turns out
the patient scheduled for the first surgery of the day ate something after the cut-off
time and had to be rescheduled! Oh how happy that made us as there is nothing like a
freshly rested surgical team when you are having brain surgery. From that point on it
all happened very fast and the next thing we new it was 1:00 p.m and we were
speaking with our surgeon who announced that all went well.
Ironically, this cyst may have been a blessing in disguise. The pressure Deb had been
feeling leading up to this surgery was caused by the cyst pinching off the left ventricle.
A pinched ventricle results in a fluid build up within the brain and hence the pressure.
It's a long story but the result of this pressure was the manipulation of the brain in such
a way that more of the tumor was exposed during this surgery than during the original
surgery. End result - not only was the cyst successfully removed but more of the tumor
as well. There were also traces of dead tumor cells that were removed. Ultimately,
there will always be parts of the tumor that cannot be removed surgically. For that we
will have to rely on a medical approach...either more chemo or some sort of clinical
trial. We will know more about that after our next meeting on the 26th. At that time we
will have the results of the pathology reports and have a further understanding of what
we are dealing with. Until that time, we won't focus on the remaining tumor. All we are
concerned about at this time is Deb's recovery from surgery.
Her recovery has been amazing, astounding and unbelievable. Late the first night after
her surgery I received a call on my cell phone from Deb asking for her soft pillows. I'm
not sure I can describe my surprise at hearing her voice at that time. The day after
surgery (Tuesday) she was very much herself albeit very tired. Wednesday the drain
was removed from her head and she was walking by the evening. Thursday she was
feeling very strong and we were sent home - we walked around the block upon getting
Today has been simply unreal. Deb has been as active as I will let her* and has not
needed even a Tylenol for the pain. Four days after major surgery with 29 staples in
her head and she is home, active and blowing all those away who see her. Her
recovery has been unreal. (* I won't go into detail but "stubbornness" is a trait that runs
in a portion of her family. I literally had to lay the law down just to keep Deb from doing
to much today. This morning she announced she would be walking down the street to
drop some stuff off at the neighbors...she thought she would go for a stroll by herself...
I let that idea last for about 10 seconds.) We ended up with two good walks today and
she would have gone further if it was up to her.
That's about it. Surgery went well. Deb is doing incredibly well and it would seem we
are further along in terms of progress since this adventure began 15 months ago.
Once again, we have had an outpouring of support and offers to help in any way
possible by an unbelievable amount of people. We truly can't thank you enough.
Thursday the 20th - Deb is back at UCSF to get the staples removed.
Wednesday the 26th - We go back for the pathology results and "the next step".
At this time - great days once again.
Yesterday was our post surgery follow up visit with Dr. Chang over at UCSF. It's clear
that Deb's second surgery was a success. It was quite obvious when comparing the
post operative scans to the pre-operative scans that a significant portion of the tumor
has been removed. This was tumor that had been unaccessible in the original surgery.
Adding to that was the fact that Deb looks and feels great just two weeks after her
craniotomy . Dr. Chang was very pleased with Deb's current condition.
There is still some running to be done. There will always be a portion of tumor in an
area that simply can't be accessed surgically. The area in which it lies is much to
'sensitive' and performing surgery in this part of the brain would bring a very high risk
of creating conditions that would negatively alter Deb's quality of life. It also seems that
at this time any form of additional radiation is not part of the solution. The solution will
be to treat the remaining tumor cells medically and that's what we will be doing starting
this weekend when Deb begins another cycle of chemotherapy. This time around Deb
won't be using Temodar. Because there had been some growth of the tumor while on
Temodar we have been advised that another chemo drug called CCNU or Lomustine
will be used in place of the Temodar. Lomustine can also be taken in a pill format and
is taken one pill every six weeks. Strong stuff!
Naturally, it would be nice to have more options in our arsenal but we don't for the
moment. There are still more chemo drugs to try if this latest one doesn't perform as
expected plus a number of clinical trials that are in the works and should be available
to Deb. Without question we remain very optimistic and positive in all facets of her
recovery. Why shouldn't we? We are further along than we were 14 months ago. Deb
is her old self and doing unbelievably well very soon after a major surgery. Her
resiliency is like no others as this tumor will soon find out.
I'll be back in a few days to let you know how she is tolerating the latest chemo drugs.
Just a brief update to let you all know that Deb is feeling well these days. She has had
some struggles trying to sleep at night - a side effect of the Decadron she had been
taking to control brain swelling. She has now stopped that medication and the last
couple of evenings she has been able to make it through most of the night. The
added rest has made a big difference in her days. Let's not forget that she still has
Tanner to contend with and he is on the go like never before.
There are no reports of pressure and no headaches. The incision has healed nicely
and once again we are seemingly back on track to kill the tumor. The new chemo
seemed to hit Deb a little harder that the Temodar did in the early stages of taking it
but at this time(a week after starting the new chemo) she seems to be past the nausea.
The picture on the front page of Deb riding a bicycle was taken a week ago. Lately,
we have been placing Tanner in the child seat and going for family rides to the park.
Deb is VERY happy to be back on a bicycle. Other than that, she has been back in the
gym working mostly on the cardio side. Slowly but surely she will work her way back to
the heavy weights and her once proud record of bench pressing 500 lbs. Really!
Sorry for the delay in updating the web site. I know from looking at the site statistics
that you've been coming by to learn the latest on Deb. The past week has been
surreal. Honestly, I'm not even sure I can remember how the recent events unfolded.
Here is where we are at this time.....
A little over a week ago Deb started feeling pressure yet once again. It would come
and go and at first we thought it may be related to simply picking up heavy objects. I
was on the phone immediately to keep UCSF posted. We both agreed to see how
things progressed and limited Deb to picking up very little assuming that might be the
cause. The headaches persisted over the next couple of days and I was starting to
notice symptoms we had experienced in the past. I wasn't sure but my gut told me
things were not right. I once again called UCSF.
Based on my feedback to UCSF they thought it best to get Debbie back in that day.
We were instructed to go to the emergency room. At this point we were thinking that
perhaps the left ventricle was a bit blocked and a shunt may be needed. We were told
after the surgery last month that this may be the case.
Once checked into the emergency room Deb was sent out for a CT scan. After the
results of the scan were reviewed it was confirmed that a shunt would be needed.
Furthermore, we were told that it was a very basic procedure. Having to be back at
UCSF was a bummer but we were relieved to hear there was a solution to the pressure
Deb was feeling and that it didn't seem to have anything to do with the tumor growing.
Unfortunately, that wasn't the case at all. Our surgeon finally saw the CT scan and
didn't like what he saw so he ordered an MRI. Deb was kept over night with us still
believing that a shunt was the solution. The next day our surgeon came in and
dropped a bombshell on us. The tumor had come back very strong in the matter of
one month and the situation is now very bad.
For my own sanity, I'm not going to go in to all the details on the web site. We have a
few options to choose from - one of them being another surgery. The surgery decision
has to be made by tomorrow (2/22). Ultimately, the solution to this tumor will have to
come in the form of a medical treatment. Neither surgery or radiation are the solution.
We know that as a fact.
It's now Monday evening and we still don't know the best course to take. The entire
family is very stressed at the moment. We have gone through some periods where it
simply felt like we were losing this battle. UCSF left us feeling as if we were simply
trying to buy time. Deb and I have had to talk about that possibility and it's been
extremely difficult. The past few days we have spent together as a little family.
Thankfully we have Tanner. He has been making us laugh and further realize how
much we love each other.
We are now over thinking about what might happen. We simply can't accept the worst
outcome. We will make the right decisions on how to proceed and as I've told Deb I'm
sure we will look back and say to ourselves "Man, that was a tough period."
Donnie and I have been busting our butts trying to research everything we can and all
possibilities that may hold the answer. As always, there is never a definitive answer.
Deb and I will have to decide this week what is the best step to take. I'm sure we will
pick the right one.
In case you haven't heard Deb was fortunate to avoid another surgery. Originally, we
had planned on a surgery this past week but a last minute MRI showed that the tumor
had not progressed since the week before. Our surgeon didn't feel the risk of the
surgery outweighed the benefits especially since Deb is doing well from a physical
This good news came at a time when it was needed. It's given us a chance to take a
breath and regroup. At the moment we are in a holding pattern waiting for a clinical
trial that Deb will participate in to open. That should happen in about three weeks. At
this time she is back on the Decadron and seems to be doing well or so she assures
me when I ask her how she is feeling constantly throughout the day.
It's feels great to be home where we belong and even more so knowing we were hours
away from another surgery when it was called off. Thanks to all who have been
sending Deb the positive messages. She reads each and every one of them and gets
a lot of strength from your supportive words.
I've used the term "marathon" in the past to describe what it is we are experiencing
during Deb's battle with this brain tumor. I want to revise that description to "Roller
Coaster". We are on a long emotional roller coaster and at the moment we are riding
high. Our first bit of good news came almost a month ago when Deb was able to avoid
another surgery. Last Friday, March 18th, we were at UCSF to review the results of an
MRI taken the day before and we were greeted with what I can only think of as a
The latest MRI showed a dramatic decrease in the size of the tumor mass. It hadn't just
stopped growing - it had shrunk in size. Not a little bit but a lot. I don't have many
specifics to share as this last meeting was more of a celebration than a hardcore
meeting where we are faced with making tough decisions in a hurried amount of time.
Deb and I simply had to laugh along with our Oncologist who had to check the scans
twice to be sure she was actually looking at the correct ones. We left UCSF that day in
a delighted haze and only when we got home did we realize that we had not really
absorbed the specifics of what just occurred. Even today we are just 'going with it' and
once again feeling that assurance that Deb is going to beat this.
Perhaps in the scheme of things this past month has been an empowering blessing.
Just about one month ago we were not sure how long we would have Deb with us.
That's the truth. It's not that we gave up but the answer to the question "What are we
going to do now" wasn't presenting itself. Here we are a month later and the tumor has
reversed course. Oddly, the 'blessing' is that we are in a completely different frame of
mind now than in the past. This last experience has strengthened us in a way that
potential future challenges will not have such a devastating effect as this last one did.
At this time, Deb is preparing to start another round of chemotherapy with all talks of
the clinical trial out the window. Outside of the tumor vanishing this is the truly the best
we could hope for and we are very grateful for where were at. As always, we have to
thank you for your support.
Naturally, we are still enjoying the recent decline in the size of Deb's tumor but things
have been a bit rough for Deb in that her sleep patterns are all out of whack. For the
past month she has probably averaged about 3 - 4 hours of sleep each night. She is
now off the Decadron completely and trying to get back to her old sleeping patterns. I
figured it would be just a matter of time before her body hit the wall and told her it was
time to sleep - I think it happened yesterday.
Deb was playing with Tanner yesterday morning when all of a sudden she seemed to
crumple over. All she could tell me was that she was extremely tired. I got her into bed
and could tell she was completely wiped out.
I figured something like this may happen since she hasn't been sleeping well but it was
still somewhat of a scare. Just two days before Deb had gone to the gym and had a big
workout - treadmill, weights and swimming. In addition, she had just started her latest
chemo cycle the night before so perhaps both of these events combined with a lack of
sleep were contributing factors to the episode. As I'm writing this Deb is still in bed and
seems a bit brighter. Fortunately, there are no headaches to report.
Today is Deb's Birthday! Once again I have been delinquent in my duties when it
comes to keeping the site current. Deb's recent party at Servino's was a complete
success. There are numerous folks to thank for that success but three in particular
need to be mentioned here - Mark Wakelin; who's idea it was to have a party for Deb
and despite twins being born he poured his energy into the event to make it the
success it was. There is also sweet Sue Parsons who coordinated the auction amongst
other tasks and also made this event one to remember. Lastly, there is Ray Wilson.
Perhaps you noticed the balloon decorations? That's all Ray. Give Ray a couple of
balloons and he can make a prison cell look good! Call Ray at Balloon Delights for all
your party needs! 461-8119. (Just a little plug there for you Ray ;>) Overall,
approximately $15,000 was raised for Deb's Health fund. Thanks to all. It was an
If you attended the party you may have noticed that Deb was having a bit of a tough
night. The fact is she had a very tough evening and in true 'shreddah' form she
sucked it up and made the best of the evening. The following Sunday we were back at
Deb woke up Sunday morning around 5 a.m. with extreme pressure and pain in her
head. After some time trying to get her comfortable we made the decision to drive in to
San Francisco and get her to the emergency room at UCSF. CT scans were taken and
the results showed swelling and potential tumor growth. We went home that evening
with an MRI scheduled for the next day. The results of the MRI were very similar to the
ones taken in February. The scans showed extensive swelling with a dramatic increase
in the size of the 'mass'.
Certainly, we had hoped we wouldn't see scans such as this again. Once in February
was enough. Although the scans are ominous looking we have a different outlook than
we did in February. There seems to be an extreme correlation between the Decadron
and the increase in swelling and mass size. This may seem obvious since the role of
Decadron is to decrease the swelling in the brain but in Deb's case though it seems to
have an extreme effect. The following time line may help illustrate my point:
remains on a dose of 16 Mg's of Decadron a day.
So it seems that the Decadron has had a major effect on controlling the swelling and
what 'appears' to be a tumor mass. Although, all indications are that Decadron won't
decrease the size of a tumor. Again, we ask the question of what is actually tumor out
of all that 'mass'?We have the next MRI scheduled for May 11th and the optimistic
outlook is that we may once again see the dramatic effects of the Decadron with the
swelling and mass dramatically smaller. If that's the case our Doctor has promised she
will write a paper on Deb's case as the effect of the Decadron on the mass is unheard
If the mass truly is smaller after the next scan Deb will stay on a 'manageable' dose of
Decadron and continue on with the CCNU chemotherapy. We should also have a
clearer picture of what is actually tumor as opposed to swelling. Tune in after May
11th for the next update and results of the MRI.
Surprise, another surgery for Deb. We went to UCSF on Wednesday of this week to
have Deb's latest MRI and then have a follow up visit immediately afterwards to review
the results. As we suspected, the swelling had gone down some and it was definitely
contributed to the Decadron that Deb has been taking. Although quite a bit of the
swelling had subsided there was an obvious issue with the size of her left ventricle. It
was rather large and expanded like a balloon.
Let me take a step back. It's become very obvious that there are issues to discuss
within these 'review' meetings when the first action taken is a physical for Deb and a
series of questions about her recent health and strength. When the meeting starts off
like that we know there are issues. I've just learned that over the last couple of years -
sure enough that's how this last meeting started.
The good news was that there was no apparent tumor growth and that the recent
swelling seems to be the result of other actions outside of the tumor. In this case, it
seems that scar tissue was blocking the ventricles ability to drain and this was creating
pressure and the squeezing of the brain against Deb's skull. We only have so much
room in our skull for added pressure and once you exceed that limit you are going to
feel it as Deb has over the past couple of weeks. I was just about to write that it 'was
strongly recommended that we consider the placement of a shunt" but that's not the
way these meetings unfold at all. Once our Neuro-Oncologist saw the scans she was
on the phone to our surgeon who commented that "he had never seen such a large
ventricle". The next thing we knew they were working to get Deb admitted to the
hospital with surgery scheduled the next day. We never know what's going to happen
at these meetings and that's what makes them so nerve racking.
Take a look at the following web page for a clearer understanding of the 'shunt' and
it's placement. Click here
The kicker for me during this whole procedure is that I have had the flu and have been
unable to be with Deb during the surgery. That part of it REALLY sucks! I'm at home,
she is at the hospital with her Mom and Tanner is staying with my mom. Thank God for
I spoke with Deb this morning and she is doing very well. Once again in good spirits
after a tough time. She is absolutely amazing and just goes with the flow. No way I
would be so calm. I'm telling you now - we could all learn a lesson from Deb. She
simply takes on each challenge without a fuss. It's this strength that will beat this tumor.
Our doctor made the comment that she looks at Deb's scans sometimes and expects
Deb to come dragging in the door based on what the scans told her but there comes
Deb walking in with no problem; she passes the physical and looks great. This tumor
has no idea who it's dealing with.
Deb will be back home tomorrow (5/14). That's providing that I'm well and the house is
disinfected. If that's not the case then I'll probably pack up a bag and go stay
somewhere until I'm healthy. Thanks for checking up on Deb. Now would be a great
time to send her a message - she loves reading your notes.
Deb is doing great. She left the hospital yesterday and went to stay with a family friend
until I get over the flu. I'm feeling much better today and Deb is planning on coming
home on Monday. I'm looking forward to the middle of next week when we should all be
back together as a family.
As in the past, Deb is showing signs of a speedy recovery. First off, she looks great.
Her stomach is sore from the incision but her overall pain level has been low with only
one Tylenol taken yesterday. She simply amazing.
Thanks again for the nice messages to Deb. I know she enjoys reading them as she
recovers in bed.
Thanks for checking in on Deb. Last week we went to UCSF to follow up on the
placement of the shunt. Deb had a CT scan in the morning, stitches out at Noon and
then a meeting with Dr. Chang shortly thereafter. The scans looked good with
evidence that the shunt is working properly. Deb's ventricles have returned to a
'normal' size and the dramatic indications of swelling that we had seen in the previous
scans now appear to be subsiding.
Before the shunt was placed Deb had been experiencing some difficulty with her left
side. Her coordination was a bit off and the range of her peripheral vision was
reduced. Since the placement of the shunt she has seen a recovery in both areas.
Deb started her latest round of Chemo on May 31st and all seems to be going well.
Even though she is a bit fatigued and needs a rest break in the afternoons she
continues to stay motivated and continues with her daily walks.
We are feeling pretty good with everything that is happening at the moment. The shunt
is working and once again Deb is steadily reducing the daily dose of Decadron. At this
time we feel like we are back on track fighting the tumor. We are very optimistic that as
the next month goes by Deb will continue to see a rebound in her coordination and
strength. We are looking forward to a 'doctor' free summer!
Click here to continue....