AML Journal 17

Zoned Out
Jul 10,2012

I got off work with my mind almost conked out.  I plopped on the bed, staring at the ceiling. I wanted to visit the patient but I was too tired.  I need to rest.  A few minutes of staring blindly into space seemed to help.  Then several more minutes of checking the mail.  I think I am feeling better now.

Deciding on which path to take is creating all this stress.  Singapore would be the best option, but I dread the 3 1/2 hour travel.  Can our patient take the stress of travel?

Going back to Manila to another specialist is another option.  But who?

Staying home is the third option.  If only the facilities here are better, I am sure the patient would choose this option.  As it is, after the Manila experience, the hospital facilities here as well as personnel services leave much to be desired.

The Vidaza however, seems to be going well. Platelets, although still low are no longer yoyoing and reds are steady too.

Wouldn’t it be nice if someone chose for us?  Then we wouldn’t have to be burdened with the responsibility of making the wrong choice.

Our patient has visibly perked up after seeing her grandchildren. She is in her element, in familiar places. Staying in one’s home is such a big morale booster. Care may not match the hospital but love, convenience, laughter and comfort more than make up for it.

A doctor comes everyday to check up on our patient. We have transferred our Red Cross contacts from Manila to our hometown and we now know how many bags to keep as back-up for the frequent transfusions.

And to be able to go home to O and my kids every night have been heavenly too.

AML Journal 16

Out The Hospital
June 28, 2012

Everything is packed. All the doctors have signed off the case. All the doctors have been paid. We are waiting for the blue clearance slip and the discharge orders.

We have requested our hematologist to accompany us on the flight home. Mama’s room is ready back home. All the curtains have been cleaned. All sheets changed. All shelves cleaned as well. Our patient is still neutropenic and ordinary bacteria could still kill her. We are all wearing masks so as to limit passing of germs.

The van we borrowed from a cousin is parked downstairs waiting to bring us to the airport.

Our patient is looking forward to going home yet also apprehensive over the flight. Air pressure could affect one’s blood flow.

Mixed feelings.

AML Journal 15

Unsuccessful
jun26, 2012

Day 20 of the repeat induction. Counts are supposed to normalize now. But our patient’s platelets haven’t risen to beyond 20,000. Transfusions are still given everyday.

The repeat induction failed. The hematologist told us frankly that a cure was not possible. I cried when she said that. We did not tell our mom immediately.

The following day we told our mom that the induction was not successful. What then she asked? The lead doctor, who has really great people skills, told her to go home and rest the body first before deciding on the next course of action. Almost 3 months in the hospital will sap anyone’s strength and deflate one’s morale.

The hematologist suggested Vidaza as the course of treatment. A low dose chemotherapy that is more maintenance than cure. With Vidaza, some patients have delayed the inevitable by almost 2 years. A very minuscule less than 10% have even been cured.

I could see my mom was tired and welcomed the news of being discharged and going home.

AML Journal 14

What Next?
Jun 19,2012

I think our patient is well on her way to recovery.  Her platelets are improving even if white blood cells are still low.  But the question is, what next?

If our patient does not continue with the accepted treatments, the AML is sure to return within months.  A year or two if one is lucky.

The options are:
1.  Consolidation therapy.  3 or 4 sessions of 5-day cytarabine.  Another form of chemo.  Our patient makes a face as soon as another chemo session is mentioned.

2.  Allogeneic transplant – one session of reduced intensity chemotherapy or radiation followed by the introduction of the marrow stem cells of a matched donor.  There is a risk of the graft versus host disease (GVHD) where the new immune system attacks the body.

3.  Autologous transplant – one session of reduced intensity chemotherapy or radiation followed by the reintroduction of the patient’s own “cleansed” marrow stem cells.  There is no danger of GVHD but then again, there is a higher incidence of relapse due to the fact that more often than not, the patient will still have leukemic cells at the cellular level that can awaken in the future.

4.  Low dose chemotherapy (the doctor mentioned Vidaza) – there is a very big chance of relapse within the year.

The doctors want choice#1.  Choice #2 is still iffy.  A matched donor has to be found. 
And I just found out that bone marrow transplant is now interchangeable with stem cell transplant.  Since the doctors rarely replace marrow tissue now but more and more use marrow stem cells.

AML Journal 13

One Day At a Time
Jun 18,2012

Day 12 of the repeat induction.  So far so good.  Tummy is unsettled and burping happens at all hours but other than that, nothing really major.  Although I’m no doctor and maybe the tummyache could be a sign of something major.  But so far the doctors are not very worried. More like trying to find a cure to make the patient more comfortable.

The hemoglobin and reds are inching up and are almost normal.  The whites are still super low and the platelet counts are yoyoing.  But at least none of the 4 digit scare of the first induction.  The albumin is also low but what can you do?  Just a whiff of cooked food and the patient wants to puke.  The only thing she can take is ice cream and “lugaw” (porridge).  The egg whites are really unappetizing, I tried it.

Only 4 doctors are left.  The rest have signed off.  There’s the hema (they’ll be the last to leave), the cardio, the gastro and the all important infectious diseases.

So now, we’re marking time.  Taking things one day at a time.  I don’t want to plan.  Plans might change midway.  I have hopes but until then, all flights are one way.  All plans are for the week, at most.

AML Journal 12

There’s Only One
May 31,2012

All of mama’s friends who I’ve talked to and all of our relatives tell me that I should stay with my mom.  It wasn’t until my good friend Win said the same to me that I was able to say what was on my mind.

I told Win that I had to take care of the hubby too.  2 weeks away and 5 days home, that’s my schedule. The 5 days away will be taken over by sis-in-law. Win tells me that I only have one mother.  And I told him I only have one husband.  “But you can’t replace your mom” he says.  “But I don’t want to replace the hubby” I say.

Yup, it’s a delicate balancing act between being a daughter and being a wife/mother.  Once I explained that part of having another life, the people usually agree with me.

AML Journal 11

All of a Sudden – a Respite
May 30,2012

Its weird.  Our patient’s blood count is finally recovering.  As such, infections are being overcome and for the past two days, our patient has been sitting and walking more.

I should be happy right?  But I found myself at a loss at what to do this afternoon.  I spent most of the day surfing and talking to the parent whose child is confined across from us.  Our patient needed less assistance these past 2 days.  Her arms are finally free of peripheral lines.  There is no urgency in looking for platelet donors.

And I am hopeful that the repeat induction therapy will not have the grave complications that happened the first time.  Our patient’s first induction therapy was not successful. It turns out our patient tested positive for the FLT3 mutation which makes her AML more difficult to treat. The usual meds used in induction therapy was not able to wipe out the blasts (those things that crowd out the marrow such that good blood can’t be produced). Blast levels have started to rise.  That is why a second induction is needed. The same protocol with Sorafenib will be used at the same dosage.

This second induction will be entered into with the patient cleared of infections unlike the first one where the patient had mild pneumonia and was coughing up sputum, sometimes tinged with blood.  This time around, our patient’s blast levels will be at less than 40% when induction starts unlike the first one where the blast levels were at 88%.  

We are hopeful with this second induction. We have more information at hand. We are hopeful that we can go home with complete remission 4 weeks from now.

All Women

I normally do not listen when the flight attendant announces the name of the captain and the first officer. But then mid-flight, I always look out for the captain’s speech since it means it is 20 minutes to landing, a woman’s voice comes on… “This is your captain speaking…” A woman’s voice. My interest was piqued as I listened to her announcement.

And when we finally landed and the flight attendant was thanking everyone in behalf of captain Nicolette and first officer Anna Karenina and the 4 female attendants, it struck me that this was the first time I was on a flight with an all female crew!

Amazing! It made my day. And I told the flight attendant so when I got off the plane. She beamed.

AML Journal 10

Well Meaning Advice
May 25,2012

Many friends and relatives have recommended other doctors for a second opinion.  There are suggestions of stem cell therapies, supplements etc.  It’s giving me stress.

There are a few, those that I can count on one hand whose advice I have taken seriously only because they seem to know what they are talking about and/or they know what AML entails.

Just to give an idea how different AML is from the typical breast or colon cancer or ovarian cancer- the number 1 difference is there is no tumor.  There is nothing to operate on.  There is nothing to remove. The cancer is in your blood.  Blood is everywhere in our body.  The bone marrow is everywhere in your body.  Where you have the bone, you have the marrow.

Secondly, there are no stages.  When its AML, then its stage 4.  You have no time for a second opinion. You have no time to shop around for a doctor. So many people have asked me why St. Luke’s?  Why this doctor?  Eh hindi naman namin alam na AML e. Akala typical check up lang. Anong magawa namin, pagpasok di na nakalabas. (In the first place, we didn’t know it was AML. We thought it would just be a regular check-up. What could we do? Once in, we could no longer get out.) AML if not diagnosed and treated could lead to death in less than a month.

Third, when talking about drug treatments, there is a whole range of factors in determining treatment.  Di lang porque AML, pare-pareho na (Just because it is AML, it doesn’t mean that all treatments are the same).  There is the age factor.  Obviously one who is in the 60s can not be compared to a 13 yr old.  Likewise there are subtypes that respond to different treatments.  And chronic leukemia is not the same as AML.  Even Acute leukemia has different categories.  There is lymphocitic leukemia, ours is myelogenous.  I will only listen if the patient who got well is of a similar age and subtype as our patient.

Fourth, in order to use stem cells, one must be healthy enough to receive it.  There is no point talking about stem cell therapies if the body is very very weak and immuno-compromised (neutropenic).  

As our hematologist said; chemo for breast cancer? Pinky finger lang iyan sa induction therapy ng AML (that’s just a pinky finger when compared to the induction therapy of AML). To illustrate further, friends who have undergone chemo in Singapore usually go to Singapore for 4 days or so and are able to travel home to recuperate before the next cycle.  With AML, in exploratory talks with an hematologist from Mt. Elizabeth in Singapore, our AML patient is expected to stay 4 to 5 months.  Straight.
 
See the difference?

But of course, I try to be graceful in the face of such well meaning advice.  Pero sa totoo lang, malapitlapit na siguro ako sa retort stage.  Baka writing this down will help defuse the supladitaness welling up inside of me. (But in truth, I am quite near the stage where I might not help myself and make a rather sarcastic retort. Maybe writing this down will help defuse the bitchiness welling up inside of me)

Vision

What is my vision for our company? I have no ambitions to be market leader nor to dominate.

I have been stumped with this vision thing for our course requirement. In the past, as long as we made money and our customers were satisfied, I was content. Still am content. But now I have to come up with this vision thing to make everything that we have been doing more “professional”.

Maybe I just don’t have high ambitions.

Whatever the case, I sometimes think that this new knowledge is a bit dangerous. I am just glad that I, more or less, know what I want out of life and out of our company. It is easy to be swept away by the grandiose talks of the professors. I know their role is to inspire and I listen politely. But in the end I know that that is not what I want. Maybe my brother will want that. Maybe my sons will want that. But as long as I have a say, we will be content with not making waves. We do not need to receive awards for top sales. As long as we are growing, that is enough.

We are certainly no Amazon nor Google nor Nike. I am definitely no Elon Musk nor Steve Jobs. I am no innovator but our company has survived 48 years, 22 of those under my care. I can only hope that it will survive another 48. And I guess that is the main reason I enrolled in this course.

I need to systematize what we have been doing for the time when I am no longer around. I need to make sure the past 48yrs were no fluke. And so, I really need to come up with an acceptably ambitious vision.

Inspiration, I am open to your visit. Please don’t let me wait too long.