My Leukemia (CML) Blog.............................. (That sounds inviting, no?)

26 - The Cancerversary

2008-12-03T13:26:00.000-08:00

It passed quite uneventful really, but I just realized today was my cancerversary. Couldn't really let that pass without making a quick blog entry!

Well, I guess I can say it has been quite the year since diagnosis: we've sold our house in the Southern California (as one of the last people in the US I think), moved into a rental, became a US citizen, had our second baby daughter born, found a new job in the Netherlands, moved from the US to the Netherlands with all the ladies in my life (including dog), my wife received her Dutch "green card", and last but not least.... reached the third stage of remission.

So that's it in a nutshell, happy cancerversary to me and....... many more to come!!

25 - The Good News

2008-11-06T14:53:00.000-08:00

Well, the good news is: I'm still alive (you might have wondered, since my last entry was an eon ago)!!!! Haven't blogged for quite some time, I guess you could call me a real lousy blogger and I would have to agree!

So, for a quick update: this blog is no longer written from Southern California, we have changed our digs to the Netherlands! Man it's wet here!! The first week it was still exotic, but give me a break, the novelty wears off quite quickly!

This picture was taken on one of the few nice days. Jill calls it the wheelbarrow bike, which a parent at Ella's school let us borrow, since we were transportation-less and Jill was walking a total of 2 hours a day back and forth to school, thanks to Annemarieke for that!! So, we currently live in Bussum (about 20 minutes east of Amsterdam), which I guess you can could say is the OC of Holland, just with teeny, tiny houses (it's just as unaffordable though). Even the housewives here have their own show, though here it's not reality based and it's all fiction (how else could you match the Real OC housewives!).

Let me rewind a bit for a minute and give you a summary how we ended up here. As you steady readers (all 2 of you) might know, we've been considering a move back to Holland for quite some time (about a year and a half). The Leukemia thing seemed to put things on hold for a bit, but after having lived with it for half a year, we kind of figured: what's the difference following treatments in the US or in Holland. Well I looked into it and it turned out there really wasn't much of a difference, so why hold off if it's something we really wanted to do. Shortly after that realization I received an email from a good friend of mine (who knew I might be lookin' for a job) with the message that, he knew of a job that might be a good fit for me (thanks Pepijn). Well, as it turns out it was, we did 2 interviews through Skype (kind of neat they were willing to do this), after which they flew me out for kind of a final meet and greet and made me a job offer, which as you might gather by now, I accepted.

This was back in June, needless to say we had a thing or two to arrange (first excuse for not keeping up the blog), but though we hit a few snags (mainly paperwork related, passports, customs, immigration etc.), everything that needed to get done got done and we made it over. Two weeks ago all our stuff arrived (no more sleeping on the ground, watching a 3" TV, or sitting on wobbly chairs!!!) and we are mobile again, kind of fun driving around with California license plates!!!

Well that's it in a teeny tiny nutshell. On the Leukemia front I have to say that I happened to find the best GP (the gatekeeper to specialist treatments)! His name is M. Voerknecht, just thought I'd give him a plug (hope he doesn't mind, not that he'll ever know I guess!). Anyway, I contacted him from the US, letting him know of my "condition" and without having met me, or having any insurance info, or being paid a red cent, he went out of his way to set me up with an appointment at my requested medical center. Wow! that was such a load of our backs (the social medicine bit did scare us a bit - Am I going to have enough pills to last? what if it takes a while before I get an appointment/the insurance to get through? are we going to have to send our friends in the US to Kaiser to get some extra pills? (we did hang on to our insurance beyond us being in the country, just in case). Totally amazing that someone goes out of their way to help you, without having met you, heck without even being in the country! Really a true testament to his professionalism, I can't say enough about it!

Anyway, after my first visit to my new University MC, I felt I was in good hands. Treatments are the same, docs are friendly enough and my blood results came back: "Very Good". Not sure what that meant but that was the voice mail I received a week or so ago. Which reminds me: my doctor in the US did my final PCR in the US right before I left and............ Yippie ah "Yeh" (happens to be my Kaiser Dr. name), I am in the third stage of remission!! That was great news to leave on.

So, so far so good. I'm still debating if I'm going to keep up the blog (not that I have been really), it took me a while to convince myself to even write this post. I guess I'll just grant myself the freedom to do whatever I want with it. On that note: au revoir or "tot ziens" (may that be your first Dutch lesson).
Cheers,
Rob

24 - The Survivors in Europe

2008-06-23T14:19:00.000-07:00

Our friends are traveling Europe..... Sylvester Style......... 5 adults, 2 children, 1 R.V. designed for 6, 21 days..... You get the drift....

For a few laughs read their adventures at http://www.sylvesteracostaeuropeanvacation.blogspot.com/

I wish them the best of luck, they'll need it!!

23 - The B(o)MB

2008-06-21T14:37:00.000-07:00

FYI, not really the bomb but I'm having my Bone Marrow Biopsy this Monday morning. If anyone has some leftover Morphine, just email it over!!

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6/23/08
Well the BMB is done and actually went a lot easier than last time, still not quite comfortable, but definitely faster and less painfull than last time. Per the nurse they had some new needles that they thought were sharper hence it was easier to get through the bone, whatever it was, it was better. Now hopefully the results are good and I'll only have to go through this once a year from here on out!

22 - The First Update

2008-06-21T14:30:00.001-07:00

All-right, I’ll admit it……… I’ve been a very bad boy as far as my blog is concerned…… 2 months, really………. Excuses…….. Plenty!!!!

So where to begin in this first catch up entry……… Let’s start at the most important bit, the birth of Isanne.

The whole birth experience sure was a lot easier than with our previous daughter, mainly due to the fact that the baby did not have to be induced this time (which was a 36-hour affair last time around). When the contractions started Jill actually had to call her cousin to check if these odd cramps were indeed contractions, and I went into timing mode. About an hour and a half into the contractions they started coming at regular and short intervals so we called Kaiser to let them know we were coming and rushed to the hospital.

When we arrived Jill “kindly requested” (read that with a lot of sarcasm) the epidural, and she barely got it. The nurse told us pretty shortly after the epidural was administered that if Jill was ready, the baby was ready to be delivered. Jill insisted she wasn’t quite ready to push yet, but after she finished watching an episode of CSI, she put her mind to it and Isanne was born in about 7-8 pushes. Pretty incredible stuff!!

Now for the CML related bit, we had decided to store the cord blood of our newborn for future use. Not that it really can be of any use at this point, Gleevec is working just fine, and the total amount drawn from the cord is not enough for an adult anyway. However, we felt it would be a good insurance for our daughter if she might need in the future, or for me, if regeneration of stem cells ever becomes a realistic possibility. Anyway, our delivery doctor had come in previously and asked us if we had any specific reason for collecting the cord blood. We told him about the Leukemia and he replied by saying that he would try extra hard to get out as much cord blood as he could. The nurse later told us that we just “happened” to get the head honcho who does inner womb blood transfusion.

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On a sidenote, a little odd, but whenever the subject of cord-blood storage has come up, I've felt compelled to make sure everybody knows that Jill was already pregnant before we found out about the Leukemia. I guess I don't want anybody to think we had the baby for the cord blood. Kinda dumb, I know, so as of now, I'm done making that point!!
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Needless to say we felt like we were being looked after, some might call it luck, we feel otherwise!! In any case, as it turned out, he did try his absolute best. As he told us after he was all done, he drew 138cc, which was the most he ever had been able to get. The Cord Blood Storage people later told us that it was one of their larger draws and they had collected 20 billion stem cells (sounds like a lot anyway).

So we won’t call it a miracle birth yet, but we’re getting pretty close! Anyway, on to the baby, she’s doing great and couldn’t be more content. Sorry to Ella if you ever read this, but she’s a breeze compared to your younger days ;-)!! She’s starting to just wake up once for a feeding in the night, which really helps with getting enough zzzzzzzzzz’s at night. She’s just starting to respond to people and it is really magical to see the little face light up when she sees you and crack a smile, kick some legs, and let out a little googoo gaga!!

All right, next update to follow later!!

21 - The New Arrival

2008-04-14T20:56:00.000-07:00

Just a quick note to let you all know we are the proud new parents of Isanne Adrienne van Daalen. She was born on April 9th at 22:43 (a little over an hour before her due date, pretty decent timing) was 20.5 inches long and weighed a whopping 9 pounds and 10 ounces (4,360 grams). I'll blog a bit more later with additional pre & post birth stories, when sleep catches up to us. In the mean time we're enjoying parenthood for a bit. Cheers,
Rob

20 - The CML Testing Eplained

2008-03-21T23:07:00.000-07:00

The explanation below is a detailed one and all honors go to Trey, who has posted this on http://ubb-lls.leukemia-lymphoma.org/ubb/Forum17/HTML/001113.html
Thanks Trey for the clear and educational explanation provided below, exactly the way we like it: In Layman’s terms!! (still had to read it twice!!)

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This is designed as a general overview to provide a basic layman's understanding of testing and CML. I will avoid the jargon and keep this somewhat short, so this will not cover everything in detail. For more details, Google the phrase and also askyour doctor/Oncologist.

There are tests to diagnose CML, evaluate response to therapy, assess the levels of the remaining disease, and to check for specific problems. Among these are Complete Blood Count (CBC), Bone MarrowBiopsy (BMB), Bone Marrow Aspiration (BMA), Cytogenetics Testing,Fluorescence In Situ Hybridization (FISH) testing, Polymerase ChainReaction (PCR) testing, and some miscellaneous other tests.

When a person is suspected of having CML, testing is done to confirm the diagnosis. A Complete Blood Count (CBC) test will usually show avery high white blood cell (WBC) count, and may also show high platelets (PLT) and other abnormalities. But this does not confirm that a person has CML. The confirmation of CML is usually done by Cytogenetics Testing on cells taken during a Bone Marrow Biopsy (BMB)process. During a BMB, a core sample is taken from the hip bone, and marrow cells are collected that cling to that bone sample. While the hole is open in the hip bone, fluid from the hip marrow is also takenout by a syringe, and this second part is called a Bone MarrowAspiration (BMA). The BMA aspirate or fluid is extracted through thehole created during the BMB. Cytogenetics Testing is done on the core sample and aspirate fluid. The marrow cells are viewed by a labtechnician and/or doctor under a microscope, where the chromosomes are treated with a dye and observed, and the Philadelphia Chromosome (Ph chromosome), which is the indicator of CML, can be seen and a diagnosis made. The core sample is also checked for other abnormalities. So Cytogenetics Testing is done using a BMB core sample and aspirate viewed under a microscope. Cytogenetics Testing is alsoused to check for other chromosome mutations and abnormalities, so aBMB might be done again at six months post-diagnosis, and then every 12-18 months after that, or sooner if other tests show a suspected problem such as loss of response to drug therapy. When therapy reduces the levels of CML disease to where the Cytogenetics Testing can no longer detect any Ph chromosome cells among the approx 20 that are counted, that person has achieved a Complete Cytogenetic Response(CCR).

After diagnosis, it is important to continually monitor response to therapy with regular Complete Blood Count tests. When these CBC tests show that the blood counts have returned to normal levels, and especially the WBC and platelet counts, the person has achieved a Complete Hematological Response (CHR). After that, the CBCs should still be continued, but the frequency is often reduced.

The BMA fluid taken after a BMB core sample procedure can also be used to perform a FISH or PCR test. (FISH is fluorescence in situhybridization and PCR is polymerase chain reaction). Or circulating(peripheral) blood can also be used now adays with nearly equal confidence levels to perform a FISH or PCR. Both FISH and PCR show the levels of CML disease, and are used to monitor progress, or detect setbacks or loss of response to therapy. A FISH test checks approximately 200 - 500 cells, and counts the number of cells that have the Ph chromosome (technically it looks for the BCR-ABL gene in the cells). This is done by a machine which uses a dye process, isolates approx 200 - 500 cells, and counts the leukemic cells. The result is given as a percentage of leukemic cells to good cells, sothe person can say that X% of their cells are leukemic. The limitation of FISH is that it can only count a small sample of cells, so if the level of disease is only a few percent, the FISH report will likely be zero (a zero FISH is also CCR, same as a zero Cytogenetics Test). So FISH is generally not used once the level of leukemia drops below approximately 5%. At that point PCR testing is used to monitor CML patients in this Minimal Residual Disease (MRD) status, since it isfar more sensitive. A trend among Oncologists is to start doing PCRs early instead of FISH, since PCRs are more sensitive and can be used to track log reductions in disease levels, and FISH cannot track log reductions.

There are two types of PCR tests. One is called a Qualitative PCR,which is a simple "yes/no" test that says it either detected BCR-ABL(leukemic cells) or did not detect them, but no number - this is generally only useful to help diagnose CML since it helps distinguish between CML and other types of leukemia. The other type of PCR, the Quantitative PCR, counts the number of BCR-ABL (Ph chromosome cells)and reports it, so this is the type of PCR that is useful to track treatment progress, especially in Minimal Residual Disease (MRD)status where the levels of Ph chromosome cells are low and harder to detect. Some Oncologists will do a baseline Quantitative PCR at or near diagnosis to establish a baseline from which to evaluate progress, especially toward a 3 log reduction in disease levels.

PCR tests a sample of blood or marrow fluid, and can detect approximately 1 leukemic cell out of 1 million cells in the sample. As such, it is the most sensitive testing available at this time. PCR testing can be done with relatively equivalent results from either blood or BMA fluid. During a PCR test, the BCR-ABL in leukemic cells is counted and the result of the test is given as a percentage ratio of BCR-ABL (leukemic cells) to another gene in the cells (called a control gene). So PCR results are not a ratio of leukemic cells to good cells as we might think, which technically means that a PCR result is not actually a total percentage of leukemic cells in thebody. This is one reason why PCR results from one person to another,and one lab to another, are not equivalent, due to lack of standardization among labs regarding equipment and which control genes are used (there are several different control genes used for CML PCRs). That is a reason for sticking with the same lab, so the results will be directly comparable for each PCR done, and trends can be watched. It is important when switching labs that the first PCR from the new lab be used to set a new baseline, and not be directly compared to the previous PCR from the other lab.

PCR results are very useful for showing trends, whether progress or retrogression. The hope for PCR results is to see progress toward a 3 logarithmic (3 log) reduction from the level of disease that existed at the time of diagnosis. This 3 log reduction is called a Major Molecular Response (MMR). A recent advance in PCR testing is that many (but not all) labs now give the log reduction along with the percentage number. So if your lab provides the log number, then use that. But if the lab does not provide this information, it makes the 3 log reduction goal more difficult to track, since many do not knowwhere they started at diagnosis. Because drugs like Gleevec and Sprycel can rapidly reduce the levels of leukemic cells, if the first PCR is not done before starting drug therapy, the baseline forcalculating a 3 log reduction will not be very accurate. If someonehas a baseline PCR value done at diagnosis, the 3 log goal can be calculated by taking the baseline PCR number and moving the decimal point 3 places to the left. For example, if the PCR at diagnosis was10.0%, then moving the decimal point one place to the left is 1.0% (1log), two decimal places is .1% (2 log), and three decimal places is .01%, which is a 3 log reduction. So 3 log/MMR for that person at that lab would be .01%. If someone does not have a baseline PCR, and thelab does not provide log reduction numbers, some literature suggeststhat .01% should be the 3 log estimated goal, which assumes a starting value of 10.0.
If a 3 log reduction is achieved, the next goal becomes maintaining the 3 log reduction or even continued reduction toward PCRundetectable (PCRU), where the PCR is not sensitive enough to detectany leukemic cells in the sample. This PCRU is called CompleteMolecular Response (CMR), which is the deepest level of responsecurrently measurable. In PCRU status, the leukemic cells are mostlikely still there, although fewer than 1 in a million. There is notest to determine if a person with CML is actually cured (usuallyassociated with a stem cell/marrow transplant). The current indicatoris 5 years without therapy coupled with continuous PCRU.
FISH numbers do not correlate to log reductions, so PCR must be usedfor log reduction measurements. Also, FISH percentages do not relateto PCR percentage numbers. For instance, at diagnosis I had both a FISH and PCR done. The FISH was 100% and the PCR was 7%. That isbecause FISH is a percentage of leukemic cells to good cells, but PCR is not (see explanation in earlier paragraph). Beyond that, the FISH has an error rate of approx 5%, so your FISH could read 5% but actually be zero. When the FISH result gets below approx 10%, you should rely on PCRs from then on. A recent trend is to only perform PCRs from the start and not use FISH.

There are other tests that are used for monitoring CML patients, suchas a Liver Function Test to make sure the liver is not adversely affected by CML drugs; a Basic Metabolic Profile (or Panel test) which checks both mineral levels and kidney function; heart function tests(a disputed issue among researchers); CAT Scans or physical checks forenlarged spleen, checks for enlarged lymph nodes; and complete orpartial physical exams. There are also other lab tests to check forspecific problems when suspected.

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Thanks again Trey, Very Helpful!!

19 - The First PCR Results

2008-03-21T22:11:00.000-07:00

So, here's the PCR test damage with history:

12/3/2007 2.2X10-1 (.22 if I remember my high-school math correctly)
12/24/2007 8.5x10-5 (.000085)
03/07/2008 1.1x10-2 (.011)

So the middle result is obviously a little off and the doc ordered another PCR test for 3 weeks from now to get a better idea on the trend. As I started typing this Blog entry, I had a little lighbulb glow above my head with an idea on why the result on 12/24 seems so far off. I work with numbers a lot and have it happen quite often that when manually balancing figures on a 10-key I'm off by 3 (due to striking a wrong key; 6 instead of 9; 1 instead of 4 etc.). I wonder if this isn't just a simple input error where the 5 was hit rather than the 2, which would have put the results more in line with expectations. Either way the trend seems to be going into the right direction and I guess we'll find out a little more the next test around. BTW this means I have a 1 log reduction. The log bit means the decimal has moved over to the left one spot.

Example:
Base = 1
1 log reduction = .1
2 log reduction = .01 etc.

For those interested in the various stages of remission, here's a little summary:

Basically there are three stages or remission

Complete hematological remission (CHR)- This is when the blood shows no sign of leukemia, the white count and platelets are within normal range. This usually occurs within a month of taking Gleevec and is the first stage of remission. Goal Attained!!
Complete cytogenetic response- This is called CCR and occurs when out of 20-50 marrow cells, no cell with a Philadelphia chromosome was detected. - For this we do the Bone marrow at 6 months (now is too early yet according to my onc.)
Finally we have molecular remission (MR) where out of upto 1 million cells, no BCR-ABL transcripts are detected. there are two stages of molecular response.

Major molecular response (MMR) which is when there has been a 3 log or more reduction in BCR-ABL transcripts from PCR compared to diagnosis values (1000-fold reduction). So a 1 log reduction after 3 months seems like a move in the right direction and I guess my goal figure here is .00022.
Complete molecular response is when no BCR-ABL transcripts are detected by PCR. Goal Figure 0.00000, You are now PCRU (PCRundetectable), The ultimate goal!!

PS: Doc liked the Shitty Chromosome Shirt, and called me a nerd for wearing it!! - Hey, at least he has a sense of humor!!

18 - The Crossed Fingers

2008-03-21T09:00:00.000-07:00

Keep 'em crossed. We will find out the PCR results @ 4:30 PM..................... I'll keep you posted!

PS: I'm wearing my Shitty Chromosomes shirt, we'll see if the doc will be "havin' a laugh".

17 - The New Arrival

2008-03-20T10:07:00.001-07:00

Well it’s exactly 3 weeks from now that there will a third female in the household (excluding dog), that is if the due date is a tad more accurate this time around (Ella was induced after being 2 weeks overdue, I know Jill hopes not to have to go through that again). All secret hopes for a boy have disappeared since the last ultrasound a week or so ago, but naturally I’m just as happy. I think the pregnancy has been fairly easy so far for Jill, or at least she hasn’t said much to the contrary. A little sleep deprived as of late due to uncomfortable sleeping positions, but overall it hasn’t been too bad, but who am I to say, I’m not carrying her around am I.

In general this pregnancy has been less filled with anticipation than the first time around (though we’re of course very excited, don’t get me wrong). Partially, probably, due to the fact that we’ve been through it before with Ella AND we know the sleepless nights that lay ahead. For another part it was a little overshadowed by the Leukemia diagnosis half way through, which then made us think of things like: should we sign up with a cord blood bank and store the cord blood, rather than, say, what color to paint the nursery.

All in all it’s hard to imagine there will be another little one in your life that you’ll love as much as you do the one that already is a part of your life, and who you know so well. But I’m sure that will be instant upon birth, as it was with Ella.

We’ve been asked if we would be trying for a third, you know the “give it a once more for a boy” pregnancy. We haven’t seriously discussed it too much, I think we both want to see where we’ll be at a year or so from now and then see. So for now, the answer is no, but we’re leaving the option open. Also, at this point I’m not even sure what effects the Gleevec might have in this regard if the man is taking it. I know it’s possible in the woman’s case, Like Erin Zammett did (though she quit taking Gleevec during the pregnancy all together, can’t have been an easy choice either) and according to Rob over in England it might not be an issue anymore, though nothing’s for certain. I guess I’ll have to ask the Doc.

Speaking of the Doc. I’ll be seeing him tomorrow and find out about my first PCR test results, which should hopefully give an indication if the Gleevec is doing it’s thing. A little anxious as you might imagine so: Keep your fingers crossed for me please!!

Cheers,
Rob

16 - The Shitty Chromosomes

2008-03-15T10:53:00.001-07:00

Love these in your face T-Shirts from Mike (Jill shook her head when I held my fashion show, meaning she thinks Mike is nuts!!). So if you want to wear something unusual to your next oncologist visit, order the CML Shirt from Mike's store. Can't wait to see his face next week!

www.cafepress.com/8232

Thanks Mike!!

PS: For those of you wondering about the significance of Philadelphia, it's the Philadelphia Chromosome that's responsible for someone joining the CML Club.

15 - The Statistics

2008-03-14T11:13:00.000-07:00

Found these statistics of CML on the website of the American Cancer Society, thought they were kind of interesting.

The American Cancer Society estimates that 4,830 new cases of chronic myeloid leukemia (CML) will be diagnosed in the United States during 2008 (that's 13.2 people per day, or a little more than one person every 2 hours). About 450 people in the United States will die of CML during 2008.

Based on my quick calculation you have an annual chance of 1 in 62,864 to get CML which is about on par with the chances of striking it rich on Antiques road show (1 in 60,000 per http://www.funny2.com/odds.htm). Guess I'd better bring my Jackalope next time they're in town!

CML accounts for about 10% to 15% of all leukemias. The average person's lifetime risk of getting CML is less than 1/5 of 1% (less than 1 in 500). The risk is slightly higher in men than in women.
The average age at the time of diagnosis is around 67 years (Cut that in half for me) . Chronic myeloid leukemias affect mostly adults, and are only rarely seen in children.
Because of dramatic progress in treatment over the past few years, most people with CML are now surviving at least 5 years after diagnosis (That's a comfort........., I Guess.........). But because the highly effective drugs are still fairly new, the average survival of people now being diagnosed with CML is not known. (We'll hope for the best!)

14 - The Bad Week

2008-03-14T11:01:00.000-07:00

The day before Valentine’s (Yes, that totally commercialized day in February) my wife and daughter got sideswiped by a driver who must have been blind. Trying to make a left turn across 2 lanes of traffic without seeing my wife in the middle lane and banging right into her!! All seems to be well at this point, though the car was a total loss. Unfortunately Jill had to spend 24 hours in the hospital for observation (well observation of the baby really), she was starting to have small contractions. Ella was given a once over but the headbang against the window did not seem to have fazed her (tough Dutch scull).

The next day Jill came home from the Hospital and I found out from Kaiser that my sister was not a Bone Marrow match to me (but in my heart I already knew that, due to my superior prettiness genes). A bit of a bummer, but I’m glad I found out after my sister’s visit.

Then Friday rolled around and my wife was told they wouldn’t be renewing her shared teaching contract for the upcoming school year. Which means she will either have to teach full-time or if we decide to do so quit all together (not a great option since we have Kaiser’s insurance through her work, and Gleevec costs around $110 per day). The shared contract has really worked out nice for us, since it means that Ella does not have to go to a babysitter too often (no grandparents around to do that dirty work for us). I usually work Tues-Sat and Jill works Mon-Tue/Wed, which makes our weekends together kind of short but it does give us the opportunity to raise our child and only have her go 1-2 days per week to the sitter. I guess we’ll have to come up with some new master plan……

I think that was bad news in triplicate, so I’m assuming we’ll be good for a while.

13 - The Next Visitors

2008-03-12T19:13:00.000-07:00

It’s been a bit since the last entry, somehow I never quite got around to sitting down and typing my story over the past month, even though I have quite a few things running through my head. First thing first: my sister’s visit (and my beloved brother-in-law as well of course - this is the one who still hasn't cracked a joke about my c'cision (I'm still amazed))! As expected we had a wonderful time, they arrived Friday and left Monday before heading off to Costa Rica for a week. Must be nice getting all those vacation days in Holland, need to move back soon!!! It was great to see her/them in person for the first time since the whole Leukemia thing broke. It felt good to give her a big hug and sniff and snotter for a few minutes. I think it helped to see that I still looked the same and can still be the same pain in the rear as I always have been. The next couple of days we spent playing golf (where my BinL broke another driver of mine, that’s 2 clubs in the past 2 games), wining, dining, and visiting Knott’s Berry Farm.

We took the Blacksmith Picture at Knott’s, reminded us both of our grandpa who was a blacksmith in Holland. The smell was exactly what his shop used to smell like, funny how the nose triggers memories. Anyway, all in all we couldn’t have had a better visit and were a little sad to see them leave so soon!

Next posting will hopefully be a tad quicker!
Cheers,Rob

12 - The Visitors

2008-02-07T10:01:00.000-08:00

Had a couple of busy days with family from out of state visiting. They came down to move my wife’s grandmother from her assisted living room into the skilled nursing facility of the retirement community I work at. She’s about to turn 86 and old age seems to be catching up. As she says herself she’s ready to go to The Lord and she really seems at Peace with that, which is great. That sure makes me hope to get that old some day, and be able to look back on a long, happy life.

Having moved from a 2 bed/ 1 bath 1100 sq/ft (105 m2) home to the new huge 3,100 sq/ft (290 m2) 5 bed/3ba home we have figured out that the drawback of a big home is that the entire family from out of state (and their pets) can stay in your house! So tonight we were busy washing/vacuuming etc to get everything ready for my sister and her husbands arrival in 2 days. My sister and I are pretty close and it will be great to see her in person and give her a big fat hug, especially since I haven’t seen her since the whole Leukemia thing started. Talking on the phone just isn’t the same as in person, so I’m sure we’ll have a few great days.
I emailed my doctor yesterday to see if he knows/can find out anything about my sisters blood test, but I have a feeling he might be on paternity leave so I might not find out until after she’s gone. Ah well, it is what it is, off to unload the dishwasher!

11 - The Half Full Glass

2008-02-07T09:10:00.000-08:00

Time for a little update, just noticed tonight that my first refill is about to run out, meaning I’ve been taking the Gleevec for two months now. I guess you could call this my 2 month cancerversary (read that term in Erin Zammet’s book, kinda stuck in my mind). Funny, it sure feels like a LOT longer than that!

Even though I currently feel great, there still is that little fear in the background that there is a chance I might not be able to see my kids grow up. In all honesty, the scariest thought of all of this Leukemia business is leaving Jill and the little ones behind. Somehow it also seems unfair to Jill since it’s not what she signed up for either (at least I don’t remember writing it in the Prenup :-)). But I guess it was covered in the “for better/for worse and in sickness and health” bit, just hadn’t expected it to come that quickly. Anyway, I diverge….. See how easy it is to feel sorry for yourself and seeing the glass half empty!! Have to be watchful for that and stay focused on the power of seeing the glass half full, ‘cause in all reality I’ll take 80% chances of remission any day over having been born 7/8 years earlier and having a Bone Marrow transplant be the only viable option!! Things could definitely be a lot worse.
Cheers,

Rob

These PSs were added the day after!

PS: Half empty glasses are easiest found alone, late at night, when the rest of the house is sound asleep.

PSPS: For fuller glasses: Curl up to your better half and hold on tight!

10 - The Next Step

2008-01-28T19:46:00.002-08:00

My sister has taken her blood test in Holland and it has been sent to The City of Hope, so hopefully in a week or so we’ll now if she’s a match! She’s actually visiting with her husband in 2 weeks for a couple of days, so we’re all really looking forward to that. Hopefully we’ll be able to pop a bottle of bubbly if she’s a match, otherwise we’ll just have to stick with Heineken!

In about a month from now we’ll be doing a blood test on me that also gets sent to the City of Hope for analysis (the technical name has momentarily escaped me), and they should be able to tell better how the Leukemia is reacting to the drugs. Hopefully we’ll see some signs of progress. The next bone marrow biopsy is about 4 months away……… can’t wait…………………………

09 - The Move

2008-01-28T19:46:00.001-08:00

Wow, it’s been a few days since my last post! Must mean all is well I guess. We’ve been a tad busy the last couple of weeks, mainly with our move. It’s amazing how much stuff you accumulate over 8 years, but it’s all in the new house now. We had some wonderful help on moving day from family and friends, and of course everybody felt that with Leukemia I was somehow unable to lift a box. So I took advantage of that a little (but not too much :-)) but all in all we were done in a mere 4 hours, so that wasn’t too bad.

On the Leukemia front I had a checkup with my doctor this month. All seems to be well, White blood count seems to be stabilizing around 3 for now, so that’s ok. As far as the Gleevec goes I’m still on 400mg per day (which is the minimum the doctor thinks should be given in order for the Gleevec to be effective), which I try to take directly after dinner. No nausea whatsoever so I think taking it after dinner is a good thing there. Jill has actually had to remind me to take it a couple of times, which I took as a sign that it doesn’t occupy my mind as much anymore. Side effects have been very minimal so far, there has been some joint/bone aches during week 2-5 but that kind of subsided after that. Read somewhere that these aches and pains meant the drugs were doing their thing, (which made me wonder after week 5 if it was still doing it’s thing). The only noticeable difference is that I’m a little less of a night owl than I used to be, I definitely get tired a little sooner but that’s not too bad to deal with. Maybe I should try and exercise a little more and see if that helps, hope I’ll actually start some sort of routine this time around (since I’ve thought that thought a few times in the past!).

Frolicked in the snow a little yesterday, which was a ton of fun! It’s great to be able to go and play in the snow for a little while and then drive for 45 minutes and be away from the cold again. That does make Southern California a nice place to live; I think we’ll miss the weather aspect upon our next move. Hope all is well with you the readers as well, I added my direct email address under my profile, for those trying to get in touch directly.

08 - The Bone Marrow Transplant Visit

2008-01-05T19:19:00.000-08:00

Oh, Almost forgot to tell how the visit with the Bone Marrow Transplant Center went. Nothing too exciting really, except that I made it to LA within 45 minutes, meaning I arrived an hour early for my appointment. Go figure, leaving at 8AM you’d figure on a nice traffic logged journey (almost a little disappointed). So, naturally I actually had to wait ‘till it was my appointment time (though I got my Blood Pressure taken, height measured and was weighed in an hour early).

First I met with the Bone Marrow Transplant specialist who explained some about the disease and the bone marrow transplant and why they were having me meet with him in the first place; basically to get the process started just in case the drugs didn’t work, and to see if my sister would be a match to me. I asked a few questions I had, he did a physical (I was just starting my cold and had the aforementioned “kennel” cough) and he ordered some blood tests. Then I got to meet with the Social Worker who asked me how me and the family were coping with things, what my support system was like (more for bone marrow transplant reasons than mental health reasons I think) etc. etc.. Basically they wanted to make sure I wasn’t suicidal under all of this. They took down my sisters address who should be receiving a kit to get her blood tested which she would have to FedEx back to the City of Hope Hospital. Hopefully we’ll be match but our personalities are quite different (not sure if that makes a difference), and I’m a lot prettier (I’m sure that’s a factor) so chances are slim :-). On a side note I did mention to the Social Worker that a meeting like this would probably be a bit more useful right after you’re told you have Leukemia That way they might be able to talk you out of the cliff jump you’re about to make rather than have a no show for their appointment. Don’t think my suggestion will change the procedures in place, but at least I got my 2 cts in. After that it was on to the blood tests……….

Having blood drawn twice a week for the past couple of weeks I’d kind of gotten used to the blood test thing, but this time we went beyond anything I’d seen before. As the printer started spitting out labels the receptionist told me to go and take a seat so they can get started, she’d bring the rest of the labels in a minute. Casually asking how many vials of blood are being drawn she replied she wasn’t sure but it seemed to be a few. Well after counting the glasswork in front of me on the table it turned out to be 24 vials, which naturally took a few seconds to get filled. I was expecting a glass of OJ or something, but that didn’t seem to be necessary. In all honesty my hand was starting to feel a little numb but I wasn’t faint or anything. However, when you see the stacks of glass tubes in front of you, you’re kind of put back in place about the seriousness of the whole Leukemia thing. All in all I definitely left feeling a little more depressed than I did when I came.

07 - The Gifts

2008-01-04T18:30:00.000-08:00

Well it was Ella’s 4th Birthday yesterday, boy was she ever excited. This was really the first birthday she realized was coming AND…. there were more gifts to be had, really the most important bit. So the previous night we went to ToysRus (sad to say she can’t read a word, but the ToysRus sign posts no problem to her illiteracy), and she got to pick out a bicycle. The Dora one was the favorite by far, though mommy & me liked a different one way better, but due to the tires being under inflated (hence it being really hard to ride in the store), Ella’s choice was quickly made. At check out we had the option to pay $10 for assembly, why I didn’t take this option I don’t know, but at 9:00 PM Ella was finally able to ride her new bike (for 10 minutes and then straight to bed!). The cutest thing was that she kept asking throughout the day if it was still her birthday. Anyway, this Sunday will be her actual party at the local gymnastics place (we didn’t want to deal with the party mess this year) for a couple of hours and then the gift giving will finally be done for a while.
Due to my Dutchness the gifts start pouring in on December 5th when Sinterklaas comes to town (this is where your Santa stems from) and celebrates his birthday. Sinterklaas is a Catholic Saint who distributes gifts to the kids who have been good all year (sounds familiar) and his helpers (Politically very incorrectly called Black Piets) throw gingersnaps and candies to the kids. Great Holiday really and it’s actually celebrated here in SoCal each year by the local Dutch School, which Ella started attending in November. So between Sinterklaas, Santa, gifts being sent by mail from Holland by various people, my dad visiting with gifts, Sunday’s “Happy Breakfasts” (consist of a bag with sandwich, fruit, drink and a 99ct store toy so we can sleep in for an hour or so), and her Birthday, we are glad the gift giving is over and done with. Note to self, try not to have a baby in December/early January again.

06 - The Score

2008-01-03T15:38:00.001-08:00

Well the old has passed and the new has begun. Don’t really feel any different, except that I finally got rid of this blimey cold I’ve had for 2 ½ weeks. What a pain that thing was, in fact it has felt worse than any of my Leukemia has so far (though somehow that sounds really bad to say).

Really, it’s kind of weird how you start relating things with Leukemia. Like with this cold, sore throat, swollen glands, night sweats, weird voice and the most awful kennel cough (for those with a dog from the humane society, you’ll know what I’m talking about there), which took me an unusual amount of time to get out of my system. All of the sudden I started wondering if it was due to my lower white blood cell count (now down to 3.3) that I wasn’t getting any better, or maybe even worse, I had Lymphoma on top of my Leukemia. Well you get it, I finally scared myself into the doctor’s office over a cold, which he confirmed it was. He didn’t really want to prescribe any antibiotics (which I think was definitely a great call), but since I had Leukemia he didn’t want to send me home empty handed either. So the good man wrote me a prescription for some cough stuff with…… Codeine!! Score 1 for the Leukemia. So I spent the next couple of days in a nice lull (only in the evenings & not on the road) and now I feel a lot better (& still have half a bottle left!!).

Actually that was score 2 for the Leukemia since I got myself out of a meeting at work the other day, jokingly saying that I felt a sudden bout of Leukemia welling up. What is a boss to say…….. Go home is what he said! Can you blame me, it was a Friday afternoon at 4:00 PM, it would’ve lasted at least an hour and in all honesty really didn’t involve my department (what great work ethic I have!!). I guess if the Gleevec doesn’t take I’ll reread this post and wonder about the Karma phenomenon for a while.

Overall 2007 has been a good year for our family, besides the obvious not so great CML diagnosis and the fact that we’re not having a boy ............;-) . The goods definitely overshadow those items. As a family we’re extremely happy, and CML has only made our bond stronger (though our daughter does yell at us when the occasional tear wells up, maybe she missed this stronger bond bit). There is a healthy baby on the way and it’s another girl. Isanne will be her name by the way, and yes I’m ecstatic, I’m probably more of a “girls’ dad” anyway (must be all of that Euro Metrosexualism in me).

We have wonderful friends and family and a great supportive Church family that has really come through for us this past month. We were really overwhelmed by the outpouring of support. In fact at a certain point there was prayer going on in Reformed, Christian Reformed, Catholic and a Romanian Orthodox Churches (we still haven’t told our friend who’s a priest in the Episcopalian Church) AND in different languages as well: Dutch, English, Spanish & Romanian. You’d figure someone up there should have gotten the message and put me on the “get well soon” list.

On top of that we’ve put our house on the market early December (a week after the diagnosis), since we are still planning on moving back to the Netherlands. In fact I think the CML has only made our resolve to move stronger since we feel it is very important to have family members closer by than we currently do. However, we will probably wait a little longer in doing so until we know better where we are at with the CML. The point is though that our house was sold within a week, had 2 offers and 2 more interested and it looks like we’ll need to be out by January 20. Unbelievable really for listing in the slowest month of the year in a super down market, but we’re happy to take the money and run since we feel housing prices are not going to be going up anytime soon and a rental gives us the flexibility of moving whenever we want. So if any of you aren’t doing anything around the 20th and you have an able body (not too concerned about the willing part), feel free to come and lend us a hand.

We could really use your help……..you know………., my wife is pregnant and I have Leukemia…………

05 - The Map

2007-12-29T16:58:00.001-08:00

During my last visit at the Doctor’s office we talked about getting a blood sample from my sister to see if she would be a possible bone marrow donor match. He thought they would send her a kit with the necessary stuff, she would take a blood test and send it back to the City of Hope (which is where the transplants would be done). I told the doctor that before he would send anything to the Netherlands it might be helpful to know where it was (see previous post for his scary Geography knowledge), so I casually whipped out the above map on which I had circled The Netherlands and handed it over to the Doc. I continued by saying that by giving him this map, I was assuming he knew where Europe was ………… He did laugh and assured me, he had been to Europe before. I just hope he’ll refill my next Gleevec prescription!!

04 - The New Camry

2007-12-28T12:41:00.000-08:00

Monday finally rolls around and off we go to the doctor to find out what the next steps are in the process. First I get the usual blood pressure and weigh in routine, already lost 4 pounds, which I attribute to drinking a tad bit less, something about drug/alcohol interactions. Just when you need it most!

The doctor is a very friendly, full of high-energy type of person, which under the circumstances is kind of a good thing I guess. After he asks how we’re coping he goes over the different treatments that exist and used to exist for CML. He explains that while bone marrow transplants were close to the only option 7 years ago, there is now this fantastic drug called Gleevec, and for those resistant to Gleevec there is already a 2nd generation drug from the same company that’s 50 times more powerful and has been approved for use on those that are resistant to Gleevec. This newer drug is now also in clinical trial for people whom have just been diagnosed with CML and are still in the chronic stage. This is the clinical trial he had referred to when he called the prior Friday to give me “the Verdict”.

His analogy to decide which drug to choose was strangely related to cars: if I was someone who wanted the newest Hybrid Camry (His choice, definitely not mine) when it came out then I should go for the Nilotinib (Super Gleevec). I responded by saying I’m the type to go for a model that’s been out for a year or two, when all the kinks have been worked out. And the way I saw it was that if the Gleevec didn’t work I’d have the option then to try the Nilotinib, while if for some reason the Nilotinib didn’t work I’d pretty much be all out of options. So I opted for the “safe route” and opted to start straight away on the Gleevec. I think he might have been a little disappointed to not have his new “test case”, but he seemed to understand my choice nonetheless. He must drive that new Camry Hybrid I guess, just hope it doesn’t break down too often…………………….

He also scheduled an appointment for me to go see the bone marrow transplant department in Los Angeles, so I could get started and find out if my sister is a match to me (25% chance), just in case my above option strategy didn’t pan out as planned.

03 - The Verdict

2007-12-13T12:42:00.000-08:00

So the tests are done, the doctor was nice enough trying to make conversation while he was pounding away on my bone with his hollow needle, I think he bent one or two and the nurse had to go get more from another room. It did concern me a bit that he had no idea where Holland was at: “ah yes, in Copenhagen”, yeah not quite and eeehhhhh Copenhagen is a city. Though Amsterdam seemed to hit a familiar note, must be professionally related I’m sure, you know drugs and such. So I comforted myself with the thought that whatever knowledge he was missing in Geography made room for Hematological issues, so he was forgiven. Did make a mental note though to give him a little Geography lesson at an upcoming meeting, but I digress!

I was put on Hydrea (Hydroxyurea), a drug that should help bring down the white blood cells, until they were sure what type of Leukemia I had. The doctor said he thought I had the “good kind” (which for Larry David fans out there, reminded me of the Good Hodgkin’s/Bad Hodgkin’s "The Weatherman" episode from Curb Your Enthusiasm), and that drugs might be able to bring it into remission. He never mentioned which particular type it was, and at this point I honestly didn’t even know or care there were any different kinds.

We made an appointment for the following Monday when he thought he might have the results from the biopsy back (though his nurse seemed to think this wasn’t possible for a two week period).

The next couple of days we kind of spent in agony and started informing friends and family, who were all extremely supportive, which was definitely greatly appreciated. Jill actually was the one fielding most (read all) phone calls, as she’s the social one anyway and she did a great job. I know all of this wasn’t easy on her either, but she can definitely stand her own. In a weird way having something like this hit, does bring you a little closer to each other, not that I ever felt we were far apart, but still, something like this puts stuff in perspective and brings to the foreground that which is really important, family being number one!

Anyway, I had already taken off a few days from work for aforementioned procedure and I decided to stay home those days and let it all sink in a little and drive myself crazy by researching all forms of Leukemia (and possible misdiagnoses) on the net. The doctor called Tuesday afternoon and told me I needed to start on another drug, Allopurinol to control my Uric Acid Levels, something to do with Gout I believe. Called my boss with the news, who was really supportive, as he always is, and told him I’d be back on Friday. Friday rolled around, was at work and the doctor called, he just got the results and wanted to let me know (which I greatly appreciated).

It was as he had thought, I had CML. I asked if that was the one with the Philadelphia chromosome and he confirmed, I had actually thought I had the CLL. Still not sure if one is “better” than the other, but I guess that doesn’t really matter anyway. He told me about the different kinds of drugs and said there also was a clinical study I might be interested in but we would discuss that further on Monday.

My following weekend was spent on the internet, researching the disease and reading other people’s stories. Pretty amazing we’re able to do that when you think of how things were done a mere 10-15 years ago. I doubt you could have found out much about CML, and definitely you wouldn’t have been able to read people’s Blogs about their experiences with the disease and their hopes, prayers and battles. That in itself, for me anyway, is a big part of the “coming to grip” process.

02 - The Minor Procedure.......

2007-12-11T14:12:00.001-08:00

Funniest thing,

Telling the story to fam & friends, everyone was very interested in that minor procedure I was having done..... Leukemia.... sure.... but tell me what was that thing you were having done.... A bit embarrassing really, but here it goes, out on the Internet for all to see, I was getting a:

Circumcision.......................................... (medical reasons)

As my dearest brother-in-law noted after I confessed what it was:"I would have made fun of you, but I guess since you've just been diagnosed with Leukemia, I'll hold off on that for a while". Knowing him, that must have been extremely hard.

01 - The day that only happens to other people...... or does it....

2007-12-11T12:36:00.000-08:00

Introductions should be first I guess on my first blog ever. So, hi to all, and thanks for visiting. Read on for an opportunity to a peek in my life.

My family consists of my wife (Jill), daughter (Ella) & me (Rob) and then there's the baby on the way (still rooting for a boy though really I already know better :-). It's Monday afternoon December 3rd, '07, just brought my dad to the airport, he was over for a quick visit from Holland (where I'm originally from) to see his granddaughter (and us to I guess), who will turn 4 in January. Mom stayed home, she truly hates to fly, and we will be moving back to the Netherlands next year anyway, so we're letting her off easy. All in all life is grand, we're all in super good health and then rings the phone...........

It's my doctor with whom I've scheduled a minor elective surgery for tomorrow, he tells me he has to cancel due to an abnormal level of white blood cells that showed up during the routine blood check that was done a week prior. I should get a call to come in later that day to see the hematologist. I get the call and they tell me to come as soon as possible. OK, sure, whatever..... Let me just quickly Google what that means before I go in.......... Google: High white blood cell count.... Result: Leukemia........ Knew I shouldn't have done that, everybody knows you should stay away from the Web MD type sites, you'll only get sicker. Better quick go to the doctor though!

So, wake up my daughter from her nap, (which is an absolute no no in our house, shows I was a little concerned anyway), and head of to Kaiser. When I arrive the nurse starts talking to me about doing a bone marrow biopsy, and I, still a little unsure about the urgency of this all tell her this unfortunately won't be possible since I have my daughter with me. Why don't we do another blood test before I do anything that sounds that invasive, I am at Kaiser after all, and bigger mistakes have been known to happen ......... (I'm actually very happy with Kaiser so please don't sue based on that quote :-)).

Anyway, we do another blood test, results come back pretty much instantly and the good doctor really wants to do that bone marrow biopsy today, since as he tells me he really thinks I have Leukemia and wants to find out ASAP which kind it is. At this point I really have no idea what Leukemia is, besides some form of cancer, and all I feel absolutely horrified, truly (almost) like being hit by a bus. So I call my wife and ask her to come and pick up Ella at the hospital, which, as I have found out, is definitely not a good way to start a conversation.

My wife arrives a short while later, I tell her the news, we are pretty emotional for a while, and off I go to have the biopsy done. Takes about 30 minutes an definitely not something I'll be looking forward to doing again. The getting the needle through the bone took the hardest effort (though was not at all painful, thanks to the injections), the sucking out of the bone marrow however, was really freaky feeling and definitely more painful. Now it's time to go home, have the news settle in and wait till we get the results. There's always a chance that they're just mistaken right.........