So all summer long I have been keeping active, a little at a time, getting strength back and thankful that cold season was far off! The whole summer went by pretty quickly, with really no big changes, just keeping on my meds and waiting for the next appointments to see where my progress was at.
I was lucky to have my mom and aunt take me on a road trip in August out to California and exploring along the West coastline, it was so beautiful and such an amazing experience! I really got a chance to enjoy myself. And I was super excited to get home afterwards to start the month of September with about 2 doctor appointments per week! (Not kidding!)
So September inevitable rolled in and a week into the month I jumped right into my long list of appointments. I met a great high-risk pregnancy doctor in Winnipeg who J and I talked to for a long time, about my blood disorder and potential effects it could have on us having kids. I know that it will be difficult, and I know that there's something like a 50% miscarriage rate for me plus the likely chance that the baby will be premature, because they might have to deliver it before the 40 weeks is up (more like 36 weeks, so a month premature). I will have a very well monitored pregnancy, probably get lots and lots of ultrasounds, and I can't just wait till the baby's ready to come out, I will have to be off the blood thinners for a day or so before they induce me. I suppose we might even get some say in the date the baby is born!
It was a tough appointment, but at least J was there with me to support me. And me for him I guess. We are still sure we want to have a child of our own, even though it will be difficult and there aren't many cases like mine to use as a reference. The soonest we can start trying to start our family will be in February or March, because the doctors want to wait at least a year since my stroke and make sure the blood clots in my brain are cleared up and I'm off any medication that would be bad for the unborn baby. This is why I hope to share every experience I have in this big adventure called life, so anyone who might go through this after me has something to look at as an example.
So that was one of my many appointments that month. I saw it as a good thing, and at least we have some kind of timeline as to when we can make this next step! I met with my hematologist who had refered me to the pregnancy doctor, and he immediately cut my dose of Hydrea in half, because I'm pretty much normalized now and he wanted to see if I could manage my blood counts with more natural methods instead of these chemo drugs. This means more blood tests more often, but I am willing to do those rather than take the nasty pills that kill my immune system and cause such awful fatigue! I am also glad to be weaning off of them because I was told that because of my age (22), and the potency of the Hydrea, every year I continued to be on the drug I was increasing my risk of developing leukemia by 1%. So this is another reason I am relieved to be off of such powerful drugs.
After that appointment I had another MRI done and wasn't expecting the results for another month. I continued to take my half-dose of Hydrea (one pill in the morning rather than one in the morning and one at night). Two weeks after my dose was cut in half, I got a blood test done to see if the levels had increased. I got a call a couple days after that to set up an appointment to get blood taken out (phlebotomy), which is what I have to do now instead of taking the Hydrea. So on Friday last week I went in to get a pint of blood taken out of my arm, 500ml or 2 cups. That's a lot of blood! They set it up just like a blood donation kind of thing, I lay on the cot and got the huge needle in my arm and bled out into a little baggie for about 15 minutes. My blood can't be used for anything, so it gets labelled as medical waste and disposed of. Yep, my blood cells are too mutated and underdeveloped to be used for anything good. But that's OK. At least it keeps me from taking strong chemotherapy capsules, and if I have to give blood every 2 weeks like that to stay healthy then so be it.
So I got the blood taken out of my arm last week on Friday for the first time, I get another blood test next week Monday and then possibly blood out again that Friday again. Every 2 weeks at first until it starts to normalize itself. I finally went in for my MRI results, and got the good news that the clot in my head that went undiscovered for over 2 years is now gone! I was so excited to hear that, because I had read that sometimes a clot can become permanent and the blood vessels just find another path around it. That was something I was prepared to accept, but hearing that it has cleared up now was even better news! While I was at the MRI followup, the doctor took me off of the Acetazolomide as well. Since I was only on it to keep the pressure down in my head, and now the clots are both nearly gone, I don't need to take it anymore. This was great too, and within 5 days I was completely off of those pills. Now after not drinking carbonated drinks for the last 10 months, I don't really want to start up again, however it's nice to know that they won't taste terrible anymore! That was a main side effect of Acetazolomide, that it changes the taste of certain things, especially carbonated drinks.
In the same week, I was taken totally off of the Hydrea. So basically for the last week I have only had to take an aspirin in the morning, and my blood thinners at night, and that's it! So wonderful to be off of most of the meds and getting back to my normal, healthy self.
This really catches up to the present time. Today I sit here at my computer, with a slightly upset stomach (an effect of weaning off the Hydrea), with more energy than I've had in months. I have a paper that lists my blood tests every 2 weeks for the next month, and then we will see how things are doing, if I'm managing without the Hydrea well enough to just have blood drawn that would be teriffic! I have started working out again and plan to get a gym membership and start running again, slowly getting back into the shape I was in this time last year. One day at a time I am feeling more and more like myself. And that's a great way to feel.