Intro 5.31.99: I've moved Liz's picture page to a separate location because I've been seeing a lot of hits on it recently, even though it hasn't changed in months, and I concluded that well-wishers must be looking for updated information. I'll keep the latest info on this page for now, and once things stabilize I'll probably move this to an adjunct page and restore the main link to her pictures.
First off, I realize there may be a few of you out there who haven't talked to us in months, and are therefore unaware of the news. The rest of you can skip down to the next paragraph. If you're still reading, then this will be a most unpleasant surprise: Liz was diagnosed with cancer in early April '99. She is currently undergoing chemotherapy, and that is why her recent pictures show a distinct lack of hair. The main fact to be aware of is that Liz's disease is very serious, but that it is also one of the most curable cancers, and she is receiving arguably the best medical care available in the world for her type of cancer. We are optimistic that five years from now she and I will look back on this as the worst scare of our lives, but also as a challenge which, in the end, brought us closer together.
Update 4.8.99: Liz has been diagnosed with diffuse large B-cell
Non-Hodgkins Lymphoma. She developed a persistent cough in mid March,
and it progressed to what seemed to be pneumonia by the end of the month.
However, the "pneumonia" didn't respond to antibiotics, and a follow-up visit
showed a large mass in her chest. During a nightmare 48 hours, we went
from thinking Liz had a resistant strain of bacteria to confronting a diagnosis
of cancer. The pathology, radiology and oncology staff at Stanford probably
set a land speed record in diagnosing her disease and getting her treatment
started, for which we will always be grateful. I can understand their
burst of effort all too well -- many of them know Liz, or have worked with her,
and the urge to do something, anything, to help is overwhelming.
For my part, I start researching NHL, mainstream as well as alternative therapies,
and making a series of very painful calls to our friends to let them know what
is going on.
Update 4.12.99: We now have several different data points on Liz's cancer.
Her bone marrow shows no sign of disease. Her initial CAT scans showed
a central 15cm tumor and possible small secondary spots on her kidneys and liver,
which would point to a stage IV diagnosis. A Gallium scan (used to locate
active tumors) showed no sign of disease outside the main tumor, which would
mean stage II. However, Gallium scans are not 100% reliable, and we will
need to wait until a follow-up CAT scan in late June to get the final staging.
The staging does not alter the course of Liz's treatment (chemotherapy followed
by irradiation of the primary site) but a stage II disease is less likely to
relapse after treatment completes. Needless to say, we are very curious.
Update 4.28.99: Liz's first follow up visit shows a dramatic response
to the chemotherapy. Her main tumor has shrunk quite visibly on the chest
X-ray, and her lungs appear clear and relatively normal This is the best
news we could get at this point, and though a long road remains ahead of us
we both feel optimistic. It is the first definitive good news we've gotten
in nearly a month.
Update 5.31.99: Liz has now had 3 of 6 rounds of chemotherapy.
Her tumor is continuing to respond well to the treatment, and Liz has experienced
only a few side effects. The main side effect, numbness in her fingertips,
is common and generally disappears completely a couple months after the chemotherapy
ends. The other side effect is actually a withdrawal from one of the four
chemotherapy drugs, Prednisone, and produces what Liz describes as a 'weird'
feeling (since she's an M.D., I assume that's a medical term). Fortunately,
this effect only lasts about 36 hours once per chemotherapy cycle. All
in all, for a life-threatening illness things are going well, and Liz and I
are in good spirits. Still, we both have moments of fear and uncertainty
over a once-clear future now turned cloudy, and we are both indebted to our
friends and their constant support.
Update 6.9.99: Chemo round 4 was this morning, and we got another
piece of good news from today's X-ray. Liz's large tumor continues to
shrink rapidly, with a very visible (~20%) linear change over the last three
weeks. We'll have more exact data on tumor size, as well as the more important
staging information, when she goes back for her first follow-up CAT scan in
two weeks. Right now we're feeling pretty optimistic that she'll reach
the first major milestone, complete remission, by the end of this therapy regimen.
Our fingers remain crossed...
Update 6.30.99: Round 5 of chemotherapy brought a mixed bag of results.
On the negative side, the small spots on Liz's kidneys and liver have disappeared,
which indicates that they were in fact Lymphoma, and confirms that her disease
was stage IV. On the positive side, the CAT scan showed that all indications
of disease outside her main tumor are now gone, and the main tumor has shrunk
from 15cm to 6cm along its longest axis, which represents a volumetric reduction
of ~95%. The oncologist said that Liz's response to chemotherapy was as
good as he had ever seen in her type of cancer.
These results represent the product of four rounds of chemotherapy, and
the next data we get will be in mid-August after round 6, when she gets another
CAT scan to look for continued progress. For Liz's particular type of
cancer, there is frequently little or no response to chemotherapy after
round 4, and normally we would move to the second phase of treatment -- radiation
-- after 6 rounds of chemo. However, if Liz's tumor shows significant
response between rounds 4 and 6, they will do 2 additional rounds of chemotheraphy
before starting radiation. Given Liz's current excellent response to chemotherapy,
I would not be at all surprised if we go all 8 rounds...
Liz and I were both disappointed, but not really surprised, by the confirmation
of the stage IV diagnosis. I pointed out that, aside from the initial
diagnosis, everything is proceeding along the high-probability path: given Lymphoma,
kidney spots are likely part of the disease rather than benign cysts; given
diffuse large B-cell lymphoma, most patients make it to complete remission from
the initial treatment (as Liz seems very likely to do); given initial complete
remission from this cancer, the majority of patients never relapse and are cured.
However, we're taking it one step at a time, and right now our goal is getting
Liz to complete remission with minimal short-term and long-term side effects.
We continue to appreciate all the kind notes, flowers, food and other
gifts sent by Liz's many friends. They mean a lot to us, and we both look
forward to the day when we'll have the opportunity to repay the kindness we
are currently receiving. Thank you.
Update 7.21.99: Chemotherapy round 6 was uneventful. We spoke with
Liz's physician, who indicated that in all probability we wouldn't see further
visible reduction in the tumor from the upcoming CAT scan on 8/2/99, and that
in that case we would begin radiation treatments around 8/11/99. Typically,
a large initial tumor such as Liz's leaves behind scar tissue as it shrinks,
which eventually obscures tumor behavior on the scans. I'm not aware of
any outcome differences between 6 rounds of chemo followed by radiation as opposed
to 8 rounds and radiation, so the question is largely logistical -- if Liz goes
to 8 rounds, we'll take some vacation between rounds 7 and 8, while if she begins
radiation (which is 5 days a week) we'll just take a weekend retreat to Calistoga.
Either way, we're both ready for a little time away from the realities of cancer
and cancer treatment. Although physically the toll has been fairly minor,
psychologically the stress of the past four months is wearing on both of us...
Update 8.7.99: The CAT scan on 8/3 was uneventful, and did not appear
to show any further visible change. We're almost certainly just seeing
scar tissue at this point. We have not yet received official word from
the radiologist, but our assumption is that Liz is finished with chemotherapy
and will start 3-4 weeks of radiation next week. Liz has started regrowing
her hair, and your faithful narrator will probably follow suit as soon as her
hair begins to thicken -- typically another few weeks to a month from now.
Liz is very happy to be done with chemo -- she had more side effects from round
6 than from previous rounds, and would just as soon get started with radiation,
which typically has fewer side effects. We're both looking forward to
having the entire experience behind us, and though the first two years of waiting
and wondering and frequent checkups will not be easy, we're both feeling a bit
of optimism now that the first major milestone is in sight.
Update 8.11.99: The unexpected has occurred. Defing the odds, Liz's
tumor continued to shrink between rounds 4 and 6 (~20%). This is good
news, although it took us a little while to adjust to the notion of two more
rounds of chemotherapy. Liz was disappointed that she'd have to deal with
the chemo side effects two more times, but I pointed out that it's short-term
discomfort leading to long-term gain, and that seemed to resonate. Liz's
physician was pleased at the continued response, and stated that he'd never
seen a tumor as large as Liz's initial presentation shrink this small from chemotherapy.
Dispite the mental adjustment, Liz went ahead and had chemo round 7 today.
The doctor reduced her Prednisone dose from 100mg to 60mg to help alleviate
the side effects, but otherwise this round is just like the previous 6.
Liz is definitely more tired these days -- fatigue is one of the most common
side effects from chemotherapy, especially if one has several cycles.
On the balance, I'm pleased at today's events. In the final analysis,
it's only a good thing that her disease continues to be exceptionally responsive
to treatment -- not only does it presumably reduce her chance of relapse, it
also suggests that a BMT (which we will probably never have to face) would be
quite effective. I'm just going to have to be extra supportive for the
next couple months as the combination of chemo side effects and fatigue reach
their worst levels... that, and I'll be staying bald a little longer :)
Update 9.6.99: Liz had an uneventful final round of chemotherapy last
Wednesday. We were pleased to see that her red blood cell count has begun
to climb as a result of starting Epoetin at round 7 -- this confirmed Liz's
subjective impression that her fatigue was much better. Chalk up another
one to better living through chemistry... Reducing Liz's Prednisone dose
to 60mg has helped alleviate the most overt side effects, although she still
has trouble sleeping for the first few nights after chemo.
The day after chemo, we spent the morning in a consult with the radiation oncologist.
The information was not surprising: they'll do another X-ray to determine the
area to irradiate, then construct radiation shields to protect the areas outside
the scope of the disease. Since Liz's blood counts are so good, we'll
get the shields constructed this week, do a practice run on Friday to make sure
everything is properly set up, and begin ~5 weeks of daily radiation treatments
(with weekends off) the following Monday. The short-term side effects
of radiation should be fairly minor: sore throat, a bit of fatigue, both of
which resolve fairly quickly when treatment ends. Long-term side effects
for Liz will be primarily a double normal risk of heart disease, but the list
of rare but possible effects was sobering: pericarditis, lung infection, bone
cancer, thyroid disorders, and other unpleasantness. Still, all in all
radiation seems the correct choice -- in stage II cases, it reduces the relapse
rate by 1/3, and Liz's cancer in many ways resembles bulky stage II more than
typical stage IV.
With Liz's treatments going so well, I am feeling fairly optimistic about the
long-term outcome at this point. Liz has thus far been a model cancer
patient, with excellent treatment response and only minor side effects.
As my worry over the physical outcome of the treatment subsides, I have become
increasingly aware of the psychological toll this ordeal has taken on Liz and
even on myself. Depression is a very common side effect of cancer and
cancer treatment, and though we put on a brave face it has certainly touched
both of us, Liz most of all. I am very much looking forward to the healing
which will accompany the months and years to come.
Update 9.20.99: Liz's radiation treatments began last Monday. So
far they have been uneventful, and the end of the chemotherapy has been a welcome
development. Other than that, there is little new to report. Liz
and I have been in good spirits, and we both await the end of her treatments.
Update 9.30.99: Liz is finishing her third week of radiation, and it
is continuing to be rather uneventful. She's developed a few of the usual
side effects -- slight difficulty swallowing, some fatigue -- but far outweighing
those is the psychological change. It's been five weeks since her last
round of chemotherapy, and Liz is in much better spirits. The cumulative
depressive effect of eight rounds of chemo wasn't obvious until it started going
away, but in the past two weeks she's gotten dramatically happier, and we're
both thrilled to see her returning to her normal, cheery self.
Update 10.20.99: Liz's radiation treatments ended last Friday, and her
hair is now back, nearly an inch long. As of Saturday, I'm also regrowing
my hair, but Liz has a big head start and I don't think I'll catch her :)
Liz will have a CT scan in about a month, and that will be used as a baseline
to watch for any sign of relapse in her follow-up scans. It will be interesting
to see how large the residual mass is, and whether it is continuing to shrink
(unlikely) or has stabilized. However, at this point everyone is feeling
fairly optimistic, given Liz's excellent response to chemotherapy and her age
and overall health.
Update 12.29.99: Liz's first followup has shown what we had hoped --
the residual area has remained the same size, some other areas of scarring have
shrunk, and all her other tests are normal. This is excellent news, and
a very positive note on which to move into the new millenium.
Liz's next follow-up visit will be in late February, and I expect to have an
update in early March.
Update 3.2.2000: The good news continues. Liz's second followup
shows a stable-sized residual mass, and no sign of relapse. She has developed
an occasional cough as a result of the radiation, but is otherwise continuing
to improve. I suspect she'll soon be outstripping me in our 5K runs again.
One very interesting piece of data over the past two months was the publication
of a study which looked specifically at mediastinal DLBL, Liz's exact diagnosis.
The basic conclusions of the study matched what we already suspected -- the
overall chance of relapse post-combination-treatment is 25%. Interestingly,
the study found that half of all relapses occur in the first 8 months and 83%
occur in the first 18 months; after 2 years, the odds of relapse are quite low.
Update 5.2.2000: Excellent news today -- Liz's 6-month followup was a
solid two thumbs up. In addition, the oncologist we spoke with said that
aggressive tumors like the one Liz presented with usually relapse early or not
at all, and her having made it to 6 months without a relapse was very significant.
Although it's still far too early to declare victory, both Liz and I are now
starting to talk about marking the 5 year anniversary of her diagnosis by spending
a quiet day with each other, Nicholas, and Nick's baby brother or sister.
It was one of those days when all seems right with the world...
Update 7.11.2000: We've passed some psychological hurdle, because this
9-month followup was the first which seemed routine. Liz actually forgot
that she was scheduled for her CAT scan last Thursday, which speaks volumes
for how much it's weighing on our minds these days. We were both pleased,
but not surprised, to hear that the report was exactly as we'd hoped: stable-sized
residual mass and no sign of relapse anywhere.
Update 9.07.2000: This is now the second visit which seemed routine,
and once again the news is good: stable sized residual, no sign of relapse.
There were smiles all around during the followup, and the oncologist opined
that a relapse at this point is fairly unlikely. We asked about having
more children -- Nick needs a sibling, after all -- and were very happy to hear
that we can not only have another child (CHOP has a 50% sterility rate; Liz
is in the other 50% :) but after another year of positive followups we'd be
pretty safe in proceeding. We had always hoped to have two children spaced
three years apart, but didn't want to risk pregnancy if there was a chance of
a relapse; it now looks like we'll be able to make good on that dream.
I read through all the entries on this page before writing today's installment
-- it was sobering to recall just how tenuous things were just 17 months ago,
and how far we have come. If our motto for 1999 could be paraphrased "The
real troubles in your life will be things you never anticipated", for 2000 it
might read "Life is uncertain -- eat dessert first."
Update 11.15.2000: Another routine-seeming visit, another hoped-for result:
slightly smaller residual, no sign of relapse, normal blood chemistry.
Our only question this visit concerned the chances of long-term (5-12 years)
side effects from the chemotherapy and radiation. CHOP turns out to have
a very low (~1.5%) cumulative chance of secondary leukemias or cancers; the
major risk is actually an elevated level of heart disease as a result of the
adriamycin and radiation. Preventative measures are the usual "eat well,
stay fit" duo we've come to know and expect.
Update 3.21.2001: We're now at about the magic 18-month mark, and today's
followup was as positive as the last: slightly smaller residual, normal chemistry,
no sign of any remote relapse in an MRI. Liz and I aren't yet at the point
where these visits feel like an inconvenience, but each successive one is accompanied
with less and less anxiety.
Our next followup will be in June, and will probably just include blood
tests and an X-ray.
Update 7.1.2001: I suppose it's telling that I haven't thought to update
this page for five days after Liz's followup. We had just blood test and
a physical exam this time, both of which point to Liz being 6 months pregnant
and otherwise completely normal. Our next followup will be shortly after
she gives birth (due date: 9/23) with imaging and blood tests.
Update 10.27.2001: HOORAY!
We've made it to the 2-year post-treatment mark, and no sign of new trouble.
X-ray and bloodwork were all normal. The chance of relapse after this
point is still nonzero, but is quite low, and the followup visits will start
decreasing in frequency from here on out. Our next followup will be in
mid-December, with a CT scan (yearly, from now through year 5) and the usual
bloodwork and physical exam.
Update 12.12.2001: Liz's first CT scan since 7/2000 showed exactly what we wanted to see -- a continued reduction in residual size, and no sign of relapse anywhere. The physical and oncology followup will be next week, and we expect the next visit to be in April 2002.
Update 4.15.02: This month's followup was entirely routine, and was the first since Liz's ordeal began that I did not join her for. As expected, no change was noted in her residual and no abnormalities in bloodwork were detected. Liz's oncologist jokingly told her to stop wasting his time :) The next followup will be in September.
Update 9.11.02: Despite an inauspicious date for the followup, Liz's followup was entirely routine with no hint of trouble. We're now three years post-treatment, and the overall relapse odds given Liz's original diagnosis are extremely low, on the same level as the risk from long-term effects of her chemo and radiation treatments. The followups are also starting to feel like an inconvenience, which I take as a very positive psycological sign that we're both convinced this is behind us.
Update 8.17.03: OK, this is a telling development -- I am 5 months late updating this page after Liz's March '03 followup. The followup was entirely routine, with no sign of change at all. Liz's next followup will be in September '03, and I'll try to be a bit more prompt about posting the result.
Update 10.22.03: Liz's 4-year post-treatment followup was uneventful, as expected. Her next followup will be in March, and after 5 years they will move to a yearly cycle.
Update 7.10.04: I'm not quite as far behind this year with Liz's March 4.5-year update. It was completely routine. Her 5-year followup will be in October again. It has reached the point that we rarely even think about the fact that Liz used to have cancer, although the topic comes up every couple of months in conversation with others.
Update 12.5.04: Not a surprise, but a genuine relief and the effective end of a chapter in our life -- Liz's 5-year followup was normal. At this point her followups switch to once/year, and with no relapse in 5 years since treatment, she is now considered cured. This will thus mark the last followup for this page - chalk up another victory to modern medicine! Thanks from the bottom of our hearts to everyone who has supported us through this ordeal - we will never forget. To those still fighting Lymphoma out there who have been following Liz's story - hang in there! She's living proof that you can beat this disease cold.