I Am Not Worthy

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What the Hell Are YOU Doing Here?  Part I

OK, call me overly sensitive.

Ditto for Maggie.

It’s just that the entire experience, from the unusual ‘welcomes’ right through the interview was NOT what we expected… not at all.

Oh, I’m OK now.  Sleeping on this for a couple of nights, plus having meticulously gone over the interview audio for the purpose of creating the transcript that follows, I can honestly tell you that I see the logic behind the doctor’s compelling message.  But as Maggie often reminds me, it isn’t so much the message as it is the delivery.  Ultimately, what I believe the doctor was trying to tell me was that – at this stage of my illness – I am still ‘too healthy’ to risk the rigors required by a bone marrow transplant.  I am not at the ‘end of the line’ so to speak.  There are still other proven options that would give me a far better quality of life over the next few years.

However, the way the message initially came across – admittedly because both Maggie and I had such incredibly high expectations for another story… the CURE story – what we ‘heard’ was, “You are NOT WORTHY of my valuable time and expertise.”

But that was just the main event; the long-awaited and highly anticipated interview with the bone marrow transplant team.  As I mentioned, Maggie and I were picking up strange ‘what-the-hell-are-YOU-doing-here’ vibes right from the time we checked in.  Mind you, I haven’t been going to Princess Margaret Hospital long enough to be on a first-name basis with the staff.  For that reason alone, it isn’t the same ‘old-home’ atmosphere I had after 11 years with the chemo clinic I formerly attended.  This was only my fourth month coming to PMH, and while I have been totally impressed so far, there was something very different about this day.

“I’m here for my 1:30 appointment with Dr. Gupta”, I announced as I handed my special blue hospital card to the receptionist.

“Have you been here before?” she asked.

“This is the first time I’m seeing Dr. Gupta”, I replied.

“Do you actually have a DOCTOR here?” she pressed.

The tonality in her question caught me a bit by surprise.

“Um… yeah… I’m seeing Dr. Brandwein…” I said, wondering in the back of my mind, ‘Where did THIS attitude come from?’

“OK, take a seat”, the receptionist said blankly.

I didn’t think much more of it until later, when coming home on the train, Maggie and I tried to piece together everything that happened.

And Who the Hell Are YOU?  Part II

As part of the pre-consultation routine, my height and weight were measured.  Soon after, Maggie and I were escorted into the tiny cubicle where we would have our discussion with the bone marrow transplant team.  This was it!  Today was THE day.  We were HERE!

We were warned that we could expect to wait for some time.  PMH was a teaching hospital, and as such the doctors took extra time to not only answer the patients’ questions fully, but there were students and resident doctors also making the rounds with the specialist.  There was absolutely no rush during each individual interview.  Maggie and I knew that when it was our turn, we would get the exact same full-focused, unhurried attention, which we really appreciated.  Compared to the ‘production-line’ care we experienced before, we really appreciated the extra time the PMH doctors took with their patients.

During our wait, one of the bone marrow transplant team nurses came in to remind us what to expect.  Her first question when she entered the room stunned me.  Looking at Maggie, she asked, “And who is this?”

The question was innocent enough.  We were new to this nurse and she wanted to get to know us.  Fine.  But as Maggie always says, “It’s not the message, it’s the delivery.”

The question could have been posed as, “And who did you bring with you today?” with the tone of voice displaying more open friendliness and curiosity.  Instead, what I ‘heard’ was, “Who the hell is this and what is she doing here?”  Maggie would later confirm that she ‘heard’ and especially felt this, too.

Again, call me overly sensitive.

Ditto for Maggie.

Do we not look ENOUGH like a couple?  We were trying to think, what is it that motivates this kind of question and attitude; is it because we are different race?  Is it our noticeable age difference?  WHAT?

As my 79-year-old Mom would be quick to tell all those who aren’t quite up to speed with the times, especially with all the changes she has seen and experienced in her lifetime, “Hey, it’s 2010!  (with the implication, “GET WITH IT!”)

Maybe we’re more in tune with discrimination since Maggie is now doing a course on The Human Rights Code in Canada.  Whatever it is, we just found the question and more importantly, the attitude, to be out of line, especially for a major downtown city hospital.  I would think they’ve seen just about every combination there is.  But even so… to be asked THIS question THIS way was pretty darned offensive.

And Now, The Moment We’ve All Been Waiting For

At 2:45 PM, Dr. Gupta entered flanked by two med students.  As you might expect from a very busy person, Dr. Gupta glossed over the introduction formalities and got right down to business.  He began the interview by reviewing what he knew about my case.  It gave me a chance to clarify and/or fill in any parts that may have been missing or incomplete.  Dr. Gupta’s notes were very accurate and I only needed to confirm that they were correct.

Dr. Gupta then asked me general questions regarding my current health in order to assess my condition.  He inquired if I was experiencing any symptoms that would trigger any red flags for immediate action.  At one point, he asked me if I was able to walk at length without feeling any shortness of breath.  He expanded the topic to climbing stairs… AH, this used to be my SPECIALTY!  Although I haven’t done stairs in over a month, I bragged that at one time I was doing 5 rounds in our 22 story condo building.  I proudly told Dr. Gupta that I could still do all 22 floors in one shot with no problem.  He raised his brow and commented, “Even I can’t do THAT!  You’re in better shape than ME!”

I believe this brief health consultation was the proverbial ‘Kiss of Death’ on my chances for the bone marrow transplant in the immediate future.  Keep this in mind as you read (and listen to) the following interview.

NOTES:  We used a voice-activated recorder for this interview.  The mode we used only records when someone is speaking.  It’s not always 100% accurate in picking up complete sentences.  Next time, I’ll remember to put it on continuous mode.

The following transcript is 99.9% accurate.  On a few occasions I was able to complete sentences (shown in brackets) according to what Maggie and I recall from the context.  Dr. Gupta also has a noticeable accent which requires some tuning into.  I encourage you to both read the text AND listen to the audio as you’ll pick up the words AND the attitudes of the conversation.

You’ll also notice that later in the interview, Dr. Gupta questions Maggie’s medical background.  Once again, the ‘attitude animal’ attacks.  All in all, it’s compelling stuff!

So grab a drink and pull up a chair.  Join Maggie and I as we experience the totally unexpected:

**********************************************

Bone Marrow Transplant Interview 6-3-10

Dr. Gupta: So first of all, the good thing is that so far your
disease has been sensitive to the chemo therapy.  You had a bad
infection, but apart from that, you know, you responded first
time, you remained in good remission and you responded second
time also, but second time treatment has not been delivered
optimally in the sense that you could have received another 3-4
cycles of treatment and that could put your disease into a good
state now and you could stay well for another 3-4 years without
disease coming back.  But it will eventually COME back.

The day and age we’re living in, there is a lot of research
activity going on in this disease and a lot of new drugs are
becoming available.  One of the drugs which has recently become
available is called Rituxan and which is shown benefit in
lymphoma as well as in this CLL also.  This drug is now available
in Ontario for patients with CLL.

One option would be to discuss with Dr. Brandwein and to give you
further chemo therapy; three more rounds of further chemo therapy
and with Fludarabine and add this third drug Rituxan which may
improve the depth of the remission.

There is a risk that you can develop infection and stuff, but
that risk is with transplant also.  The transplant risk of
infection is probably ten times higher than with the simple chemo
therapy.

So one option could be that you could be given further chemo
therapy, score your disease, come back, then to consider
transplant; that’s one option.

Other option is to go for transplant now.  The problem with the
transplant is that it is a treatment with substantial risks.  If
this treatment was without any substantial risks, then I would
say go ahead.  Other treatments do not cure this illness.  You
know, you can set the clock back, but you know disease tends to
come back.  Transplant can cure the disease but it is at risk of
several serious complications and I’m going to describe those
complications to you.

Before we give somebody bone marrow transplant, we usually find a
suitable donor.  You have not only one, but two suitable donors.
And before we give any stem cells from the donor to the patient,
we give a type of chemo therapy which is called conditioning
chemo therapy.

The purpose of conditioning chemo therapy is two-fold.  The one
purpose of conditioning chemo therapy is to kill any leukemia
cells which are left over in your body.  Another important
function of conditioning chemo therapy is to suppress your immune
system so that your body does not reject the graft; when we give
the stem cells from (the donor) your body does not reject that.
Those are the two purposes of this conditioning chemo therapy.

In addition we give certain drugs which prevent graft rejection
as well as a complication of the transplant (?) disease… to
prevent these complications.

The side effect of the transplant is patient can get sort of
nauseous.  They seems like to us bad and we have very good drugs
to take care, but usually not major problem.

The chemo therapy, dose of chemo therapy you get with the
transplant is substantially higher than what you receive when you
have regular kind of chemo therapy.  This chemo therapy doses can
sometimes have (?).  Sometimes these chemo therapy drugs can
cause damage to lung, liver or kidneys.  And that risk is in the
range of (20-30%).

One of the reasons that we give you chemo therapy along with the
leukemia cell reduction is (?), and after the transplant you are
at risk of various kind of infections related complications which
could be…infection or a viral infection and we give you some
medication to prevent this but despite that there are any of
these complications can happen.  These complications could be
potentially serious and life threatening such as you once already
had one complication.

One of the major complications we treat after transplant is what
we call graft vs. host disease.  Graft vs. host disease is that
the donor cells tend to fight with your system and graft vs. host
disease can manifest in the form of a skin rash, it can manifest
in the form of diarrhea, or abnormal or irregular function.

Graft vs. host disease, depending on when that graft vs. host
disease happens after the transplant, we call it either acute
graft vs. host disease if it happens in the first 3-4 months vs.
chronic graft vs. host disease which happens later part of that
transplant.

Your risk of getting graft, both acute or chronic graft vs. host
disease is in the range of 50-60%.  If the graft vs. host disease
happens, then we usually treat with a medication (prednisone) a
form of steroids.  Graft vs. host disease does respond to those
steroids in about 55-60% of the patients; by respond, it goes
away quickly.

Russ: Permanently as well?  So it’s not a recurring…

Dr. Gupta: People who get acute or chronic graft vs. host
disease, in one part of patients graft vs. host disease can cause
serious complications.  Serious complications means the
complications which can either effect the quality of life of the
patient or can sometimes even result in death of the patient.

Not all graft vs. host disease after the transplant is bad
because some graft vs. host disease after the transplant is good
because the way donor’s cells fight with your system the same way
donor cells fight with the leukemia cells and that beneficial
effect is called graft vs. leukemia.  So some graft vs. host
disease after the transplant is good but too much is not good.
But we don’t have control over who’s going to get (which one).

Now when I’m telling you the complications of the transplant it
all sounds horrible but it does not mean that you’re going to get
each and every of them.  You may get some; you may get away with
others.  But these complications are real and we see them often
after the transplant and can sometimes result in death of the
patient because of one of these complications.

Because of these complications can turn out to be serious in some
patients, there is about 15-20% risk of death from one of these
complications.

Having transplant does not guarantee that disease will not come
back.  There’s another 25-30% risk that disease can still come
back.  So if you look at what are your chances of success with
the transplant, it’s about 50-50.  20% is from disease coming
back, 20% is come from having problem – (life threatening), that
leaves us with the 50%.

Now the important issue with patient with CLL is when to go for
the transplant.  Is the transplant needed now or should we just
go with the simple chemo therapy treatment first?  And if the
second round of chemo therapy treatment fails, then consider
(transplant).

I think my recommendation in this case would be that since you’re
strong it could respond to first line treatment.  You’ve shown a
significant (response to previous treatment)  also to continue
the chemo therapy treatment option the time (being).

Before they give you any further chemo therapy they do a retest
in the lung which needs to be taken care of before giving you
more chemo therapy.  But my feeling is given the way your disease
has shown response so far, it’s possible that you may get another
(few rounds of chemo before any transplant treatment).

Russ: I guess my question would be, I’ll be another 3-4 years
older at that time; would I necessarily be in better shape now…

Dr. Gupta: That’s a very good question…

Russ: If I was 30, and you know, the difference between 55 and
60, now we’re starting to get a little weaker.

Dr. Gupta: The outcome of transplant is usually the younger
patients tend to do relatively better than this, you know the
older patient, but at the same time the complications…  So it’s
a matter of balancing between… it’s possible that in 3-4 years
down the line we may have better 1-2 more drugs which are
approved for this disease indication and if that fails you can go
for another treatment.

Have you done any reading before coming to the…

Russ: (pointing to Maggie) This is my main researcher.

Dr. Gupta to Maggie: Are you in the medical field?

Maggie: No, no I’ve just been reading the Internet…

Russ: You know, seriously, I am more leaning towards – all
along, since 1999 when my family doctor first told me about this,
I always had in the back of my mind – you know, I’m very feisty,
I’m gonna go when I say I’m ready to go.  ‘Cause he said, more
than likely, with all the statistics we have at this time, you
probably won’t see your 60th birthday.  And I’m like, Oh really?
I’ll go when I say.  I’ve always been thinking ‘Cure’ and nobody
ever mentioned that word until we came here and saw Dr.
Brandwein.  He’s the first one who actually used the word and I
said, “Excuse me?  You said what word?”  And he said yeah, there
is a possibility.

So I’m going for the big dream because that’s always been in the
back of my mind.  And I’m thinking, all the circumstances that
have led up to this point so far; to me, it’s like the path I’ve
been wanting.  Why not take that chance?  So, that’s where I’m
leaning towards right now; if I had the option, I’d say, “Sign me
up today!  Schedule me right now because that seems to be the way
the path is opening.”

Dr. Gupta: But the possibility of cure is that it may give you
significant complications and can lead to death.  So that comes
with that sort of…

Having been in this area, I usually don’t recommend transplant
for trivial reasons.  In your case, the indication for allorgeneic
transplant is not straightforward.  It’s not that… we’re aiming
for cure; that’s a good thing, but the cure sometime could be
worse than what we’re aiming.

What we do is before we make any decision about that transplant -
on this case, it demands transplant reason which is attended by
different transplant doctors and – consensus of the meetings that
we usually…

Have you thought about the complications and stuff and would you
be still willing to go for the transplant with the understanding
of the possibilities?

Russ: She’ll tell you (pointing to Maggie), I’m a risk taker;
I’m a gambler.  As I mentioned, I can’t understand having all
these years; like it’s been 11 years now, with the dream of the
cure, alright that’s been my favorite word…

Dr. Gupta: But you had a good 11 years.

Russ: I had a great 11 years.  So I could have another great 20
years, that’s what I’m going for.

Dr. Gupta: But the cure is – the thing that you know, if you get
transplant and tomorrow you have a bad graft vs. host disease,
and even if you’re cured, your life could be miserable.  That’s
something I would like you to take into consideration before
making that decision.

If the cure was simple, that you’re a risk taker and there’s a
50-50 chance, but there’s a 50% chance that even if you’re cured
it’s not that… you will be… you could be… quality life and
stuff… so those are the things which come into consideration.

Russ: And I guess the question would be, do I want to have three
good quality years vs. thirty not so good quality or whatever…

Dr. Gupta: We’re not ruling out the option of transplant, even
if you get good three years.  After that, you can still get the
transplant.  We do transplant up to age 70 years.

Russ: Yup… and as I mentioned before, younger means stronger
which, I don’t know, to me just translates now would be the
better time of the two.  I think, like I said, between 30 and 35
it’s not so much of a difference, but between 50… I feel my
energy – even in the last year – I don’t do stairs like I did
even just a year ago.  And whether it’s because of my condition
or whatever, I just don’t feel like it anymore.

Dr. Gupta: If you’re feeling well, why don’t you want to put you
at risk…

Russ: That’s a good question!  I guess we’re always wanting to
go for the better.  I perceive…

Dr. Gupta: But the better what you perceive is not…

Russ: It may or may not be, I don’t know.  But like I said,
being a risk taker and a gambler type thing, my perception is
three years vs. twenty years… I’ll take the twenty years.

Dr. Gupta: But the transplant is not necessarily the guarantee,
there’s a 50% chance it may not work.

Russ: That’s right…

Dr. Gupta: It’s not straightforward; three years, having a
transplant, you’ll get into…

Russ: Well, Dr. Brandwein had actually suggested to us (looking
at Maggie)…

Maggie: two years; up to two years he said.

Russ: He said, for sure the condition definitely going to come
back and it’s already… I can already feel…

Dr. Gupta: If we decide not to go for the transplant, I would
recommend you have further chemo therapy.

Russ: Yeah, for sure.  And he said the next time – I had a bad
episode back in December – he said the next time could be as bad
or worse.  I might not make it through the next time.

Dr. Gupta: But… it is come infectious complications with the
transplant… ten times higher.  It is not same thing, it’s
higher… it’s higher.

You have to weigh these sort of… you know.  I would suggest you
think about these things carefully?  Do not rush into making that
decision right now to do it.  And I will discuss your case in our
meeting, and then I’ll call you…

Russ: Uh-huh.  Now, would you also be able… because my sister
and brother have been bugging me for the last few weeks.  I guess
the one question I had, is it better for the male donor vs. the
female donor, all other things being equal.

Dr. Gupta: All other things being equal – who is younger?

Russ: My sister.  Oh, there’s probably about 15 years
difference.

Dr. Gupta: So how old is your brother?

Russ: He’ll be 60 this year and she is 45.

Dr. Gupta: And your sister is 45.  And how many pregnancies she
had.

Maggie: three

Russ: She has three daughters; I think she had a miscarriage or
two…

Dr. Gupta: We would prefer male donor despite the difference
because the number of pregnancies also having effect on graft vs.
host disease, etc.  But before we decide between your brother and
sister, we would like to do certain – more blood tests (?) and
then try to select who’s the better.

So I can’t tell you right now, as I said, everything else being
equal we would prefer your brother.  But if there are certain
things which are less that your brother may be better…

Russ: The other question would be, they’re both in
Massachusetts.  Would they be required to come here for testing?

Dr. Gupta: No, testing can be done there.  But if they have to
donate the stems cells, then they’ll have to come here.

Maggie: And if he do go for the transplant, would there be a
sense of about how long from today the wait will be?  (Repeating
Dr. Gupta):  Three to four months.

Russ: Did you have the biopsy result… I did have a bone marrow
biopsy…

Dr. Gupta: It did show that there are some CLL cells there which
is about 20% which is…

Russ: OK, now does it show anything that the blood test itself
did not show?

Dr. Gupta: Blood test is fine.

Russ: It’s comparable to that.  Future biopsy – I go through the
bone marrow transplant; would I need another biopsy to check up
on that?  Does it have to come through the bone or can it be done
through a blood analysis?

Dr. Gupta: Yes

Russ: It’s not exactly the same spot though, they would tap
another (nervous laughing) that was fun…

When I have the chemo for the pre-treatment, would that
necessarily be done in hospital because of the seriousness of
that.

Dr. Gupta: That’s our policy.

Russ: Right, OK.  And it would be this hospital and not the one
closer…

Dr. Gupta: (nodding affirmatively) Anything related to
transplant and treatment…

So I’ll think about it and I will discuss your case in our
meeting and then we’ll make the final decision.

Maggie: From what we heard from Dr. Brandwein was that the
disease could likely come back, he said maximum two years, and
it’s starting to grow… that’s what we heard.  And he was saying
that…

Dr. Gupta (interrupting):  No but, you’ll continue the chemo
therapy

Maggie: Yeah, but he said what happened before with the last
chemo…

Dr. Gupta (interrupting):  Last chemo gave him six years.

Maggie: No, no, talking about the one that he only did three
rounds.

Dr. Gupta (interrupting):  But then the transplant… the chemo
therapy is ten times higher and because the immune system is
going to be weak, the risk of infections/complications does not
decrease with the transplant.  Transplant is not going to
decrease the risk of infection related complication, it’s going
to increase it.

Maggie: Yes, I understand, but he was saying that it could be
that then he could becomes refractory then he doesn’t respond to
anything.

Dr. Gupta: I will speak to Dr. Brandwein

Russ: What he’s saying though is, do the chemo and enjoy another
3-4 years…

Maggie: OK

Russ: And at that time revisit the possibility of the
transplant.

Maggie: OK (tentatively)

Russ: Instead of doing it now.  You know, I’m saying the same
thing, while I’m younger, stronger at this time.  However, what
I’m hearing now is, it’s not ONLY my decision, he (referring to
Dr. Gupta) was just using the word, I think you used the term
trivial…

Dr. Gupta: reason

Russ: reason, and I guess what I’m hearing is…

Dr. Gupta (interrupting):  We usually go for transplant if
somebody is Fludarabine – what we call Fludarabine refractory.

Russ: And it’s not responding.

Dr. Gupta: Fludarabine refractory is considered, if after
treatment with Fludarabine based chemo therapy disease comes back
within a year.

Russ: Oh, OK

Dr. Gupta: That is a clear-cut indication for transplant.

Russ: OK

Dr. Gupta: Everything else is muddy.  That’s the only area where
transplant is beneficial in comparison to the other treatment.

Russ: OK

Dr. Gupta (trying to justify his logic):  Everything else is how
you look at it.  So that’s why I say I do not recommend
transplant for trivial reason if a known transplant treatment
option gives you time.  I usually recommend go for it (chemo
therapy) because transplant is not necessarily…

Russ: I get it

Dr. Gupta: the only hope.  Quality of life is important.

Russ: That’s right.  That’s what I’m hearing now.  The other
route is probably less quality of life.  Yes, you might have a
cure but on the other hand… whereas with this one over here,
it’s already proven that – look, you look at me and you don’t see
anything sick or whatever.  So I do have a good quality of life
(looking at Maggie) I can still kick her butt (laughing).  I
understand.

Dr. Gupta: Look, I would like you to rethink everything
carefully.  I will speak to Dr. Brandwein, too and I’ll discuss
your case in our meeting and get back to you.

Russ: Great

Maggie: Thank you.

**********************************************

So there you have it.  Maggie and I are slowly but surely getting over the shock that there won’t be a ‘cure’ this year.  We’re also getting over the fact that in this day and age – 2010 – there are still people out there with ‘ATTITUDES’.

The most excellent news is, I’m still under Dr. Brandwein’s expert care.  And although my condition will more than likely require further chemo therapy almost certainly within the next year or so, I am currently TOO DAMNED HEALTHY for a bone marrow transplant.

I can LIVE with that! 

You gotta Love That Feeling!

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