So for nearly an entire year I happily anticipated my most recent visit to the hematologist. Why?? He had told me that he wanted to see me off any form of blood thinners for the new year. I was glad to get off the warfarin (aka rat poison) after finding out I was pregnant at the end of January. Did my share of injections up until the night before said appointment, which means I poked my belly with a needle over 300 times in the last 11 months. Went to my much-anticipated appointment. I knew it would be a long one, because my old hem. had to pass me along to a different one due to his research grant that he'll be working on the next 2 years. So it would be a long one, going over all my history and records and getting to know the new guy into whose hands I was putting my life (that sounds funny!). Deep breath...
We actually got in pretty fast! Which is great, so as not to make a happy baby a fussy one! Everyone in the cancercare building thought Hunter was the cutest thing. One woman, who came all the way from Nunavut which took a 3 1/2 hour flight and a 1 1/2 hour drive (And I thought I had to travel a long way, lol) thought he was so adorable she got him a little quilt from the giftshop with kitties on it. She also claimed to share my same birthday which was more than a little creepy.
Anyways, got bloodwork done, went to see the Dr, actually got in right away, and sat and waited. He came in right away. Sigh...
Apparantly he doesn't agree that I can be off thinners. So now I'm back on the warfarin (damn rat poison) which is actually OK when I'm breastfeeding. With a very, very strong possibility of having to start taking Hydrea again (absolutely NOT OK while breastfeeding). Damnit! I hate that stuff! He actually said he wanted me to start one or the other that same day. I told him if I had to make a choice it would be the warfarin because I want to feed my little boy as long as I can. So that night what do you know. Back on the rat poison. The Dr. said the usual cutoff when he starts someone on Hydrea is when their platelet count is 600. Mine that day was 599. So it's not going to be long before I have to start taking those awful pink & blue pills again. Back to losing my hair and constantly getting sick - Yay!
I would give anything to be allowed to go till Hunter is 6 months old before I have to start those. Give me time to save up more milk for him, and get out of these cold winter months where I would constantly be sick and exhausted. Right now I've got something like 750oz of milk stored in the freezer, which is awesome, but still only enough to last about a month! I figure if I am freezing 12oz/day right now and can do that for 3 more months, I'd add a little over 1000oz to what I have now and he would have enough to last about 2 1/2 months before I had to totally do formula. Hmmm... how does that compare to what I wanted in the first place, to breastfeed til he's 1? Looks like that's not going to happen. At this point I'll be very lucky if he still gets boob by his next Dr. appointment when he's 6 months old, and won't make it to 9 months off what I can freeze. That sucks!
It seriously depresses me. I mean, I got off the awful pill Sept of 2008 and I knew my counts were slowly but surely rising. Then while pregnant, just being pregnant kept them in a normal zone which was such a blessing. Now that he's out, it seems like my counts are in overdrive and I'm already waaaaay over where I should be. I mean, 599! When I went off the stuff in Sept 08 it took 4 months to even reach 500! Now it's been 3 months and I'm at the point of needing to take pills that make me feel like poo to fix things. Damn chemo drugs. Why!!! It is so maddening and frustrating. Things are going so well, and this has to mess things up. I could live with the hair loss and getting sick if only it didn't mean I had to stop feeding my baby too. I don't feel like a failure. But I feel like my fricking bone marrow is a failure.
Oh and I forgot to mention that this new Dr. is good, I liked him, he speaks using the bigger medical terms but I know enough about my own condition that I know what he's talking about. J on the other hand didn't quite follow with all that was said. He heard: 'the average lifespan for someone with this is about 20 years' and got scared. But I know that the average age of diagnosis of this is age 60, so to live 20 years after that is pretty darn great! I really have no worries concerning that. However if I have to be on harsh chemo drugs for who knows how long, that lead to me having a higher risk of developing leukemia, maybe I won't stay healthy as long as I hope to. Then he (Dr.) says that we still have the bone marrow transplant as an option down the road, but that is so dangerous and although it would likely cure me there's a chance it might not work or that my disease would come back... Arghhh! Well, I didn't find out anything I didn't already know, I suppose. I felt bad walking out of there because I knew J was a little freaked out by some of that stuff.
What can I do about all this? Well, for now, I can hold my baby boy close and tell him Mama will always be here, and not to be scared if I have to go through some hard things in order to get better. I can feed him the thing he loves best in all the world, for the time being. I can look forward to giving him a baby brother or sister because thank god this disease won't be passed to my children, and being pregnant appears to be really really good for me. I can take a million and one pictures. That's really about it.