Saturday, December 29, 2007

05 - The Map


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!!

Friday, December 28, 2007

04 - The New Camry

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.

Thursday, December 13, 2007

03 - The Verdict

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.

Tuesday, December 11, 2007

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


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....

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.........