10 - The Next Step

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

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

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

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

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…………