National Cat Day :D

Now I can say I've written for the sole purpose of making a shoutout to my kitties!

Yesterday was National Cat Day (I just found out today however), and I just had to let them know the good news as soon as I got home from work this afternoon. So to Thor, Venus, Mouse and our foster kitten Oreo, today is your special day!

Thor and Venus are our oldest, a brother and sister who will be turning 4 on Dec 1st. We adopted them from a shelter and just guesstimated their birthday! They had 3 kittens together: Oscar, Chloe (later renamed Kiva by a new owner), and Bunny (who we later discovered was actually Buddy, a boy not a girl)!

We babysat Buddy for 2 months while his new owner was in Germany. In that time (while he was only about 6 months old!), he knocked up his mom and a month after he went home, she had his two babies Hugs and Mouse! Hugs went to the same owner as Buddy ended up with, and we kept Mouse. And his 2nd birthday was Sept 29!

Oreo was found wandering the streets all over town in early October, and we guessed she was around 6-8 weeks old. We took her in because she was too small to be left out in the cold since winter was on its way! Once she was eating better though, she's gotten bigger and fatter and has the glossiest fur of all of them. We still hope to find her another home before she gets much older though!

So this is our little kitty family. And this is my tribute to them for their very own Cat Day! Love ya guys!

(Please don't think of me as a crazy cat lady now, although I am crazy for these special guys! LOL)

Happy Birthday to me! :D

Well, yesterday that is! So I'm 23 now. And its been 10 1/2 months since my stroke. I've been getting used to the schedule of getting blood tested every 2 weeks, then waiting to hear if I need a pint taken out to keep the blood cell count low. So far this week I did the bloodtest on Monday and got good news, that I can wait two weeks till the next bloodtest without getting the phlebotomy done again. So that's great, it's already starting to normalize without drugs! Yay!

I've been working more lately too, just one day last week and then 3 full days in a row this week. Hopefully I'll be getting more shifts in the coming weeks too, because I can really handle them a lot better than before! Still hoping I can hold off getting sick as well!

Anyways enough about work. I am excited that I can at least DO it, but I know its not the most exciting thing to write or read about!

Didn't do much yesterday for my b-day. After getting home from the daycare it was supper, then out with J to a meeting, and then clean the town office, then home and sit in front of the computer for a couple hours so I could get to bed at a decent time. I actually forgot to open the present my dad got me, oops! LOL! So didn't really do much, J wants to take me to the Astroboy movie that starts today sometime, other than that not much has been going on. We have been enjoying his present to me - Nip Tuck Season 5 pt. 2, I love that show. I hate that they for some reason decided it needed to be split into 2 parts though, just wanted to make twice as much from the sales I suppose. Oh well, I had to see it!

Anyhow not much more has been going on lately. So I will be back when something fabulous and interesting happens!

Today, a new life begins!

This morning I got a phone call 5 minutes before my alarm went off. It was J's younger brother's wife, with the news that J's older brother's wife just had their newest baby boy early in the morning! The baby was due either the day before or after my own birthday, the 22nd. So he arrived fast this morning, so fast that the little guy was born at home and delivered by his own daddy! I can just imaging how nervous he was! She had the baby, he delivered the baby, and that's really all the news I've heard so far. Congratulations, this little guy sounds like a real handful already!

I hope that when J and I are able to start our family it happens as smoothly as this. Chances are it won't, but I can't help but to hope. Such a huge difference from her going in labor at home in the early morning and home-delivering him an hour or two later, with no real complications. When it's my turn I hope it happens as quickly as that! I will have mine totally planned, monitored, and delivered on a preset date. Not to mention that I have to be on blood thinners the whole time, injecting myself every day so it won't harm the baby. I know it is still a bit of a wait till we have to start doing that, but I've already started taking prenatals. I hope that when we start trying, that it happens right away, I switch to injected thinners, and all goes to plan. It makes me wish it was as easy as J's sister in law had it this morning. But if it was that easy, I wouldn't have much of this unique experience to share with women with blood disorders, now would I?

I just hope that when J and I finally start our family that it goes to plan, and my doctors will continue to manage everything well, and that my baby will be healthy and happy. Even if it's a long way off, I have high hopes that we will have a little cousin for the boy who was born so suddenly this morning! And hopefully this time next year, I will be writing that this is actually what has happened! I can't believe that maybe, this time next year, we can finally be expecting our own little guy or gal! Here's to hoping!

Finally, Things are Looking Up!

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.

Polycythemia Vera

So, what is a Myeloproliferative Disorder? Wikipedia says they are a group of diseases in the bone marrow where excess cells are produced. In my case, I had been diagnosed with Polycythemia Vera. Poly-sy-theme-ee-uh Vera. Since I found myself with a lot of time on my hands and not a lot of energy, I had the opportunity to get to know my disease quite well by looking all over the Internet for information on it.

PV causes my red blood cells to multiply really, really fast, causing my blood to get too thick and raise the risk of clots, stroke and heart attack. I already knew that last part, after being hospitilized from my own stroke and two blood clots in the brain. So perhaps it was less scary for me than for someone who hasn't gone through those things but was still at high risk for it.

It is most common in men over 60, but I have been in touch with others who are younger, some in their teens, who have the same diagnosis. Knowing this, I also found that the average lifespan after getting diagnosed and treated is 10-20 years. Now I know this is nothing to be alarmed about. Just think, if on average you get diagnosed at 60, then another 10-20 years after that is pretty normal. I don't see any reason for my lifespan to be any less than normal either. But I do understand how it looks scary if you don't put those two facts together.

I know that when I was first brought into the hospital I had a high count of red blood cells, as well as platelets and white blood cells. This is pretty common with PV as well. The Hydrea I was taking was to lower the counts of all these cells. I also take blood thinners to keep my blood 2-3 times thinner than an average person's, and an Asprin a day to make the blood less sticky.

I have a team of doctors who keep an eye on my results. My family doc in the next town over, a neurologist in a town an hour away where I go for MRI's, and a Hematologist in Winnipeg who is awesome and spends all the time I need to get my questions answered. He referred me recently to a High-Risk pregnancy doctor so I can get an idea of when, eventually, having a child might be possible. At this point I will probably be waiting another 4-6 months before any progress is made about THAT!

My doctors are great, so far they have all been really easy to get along with and knowledgable about my disease. I think I've been pretty lucky so far that the doctors and I are on the same page when it comes to treatment.

At first, I was not allowed to get a lot of activity, and had to take it slow so I didn't overexert myself. It was pretty disappointing to walk up the stairs and be out of breath, or be walking in a store and have to slow down or sit because of the fatigue. But after another month or so I was allowed to try to get back in shape, and basically started from scratch to get stronger and have more energy to move around.

In the spring, I think it was March or April, I got a casual job at the daycare in town, and worked once or twice a week. It was great, I still work there and just have so much fun playing with all the kids and pushing them on the swing. I know that working there has done a lot for my strength and endurance. It has, however, shown me how poor my immune system was on those pills, because after an 8-hour shift I'd end up sick with no voice for a week!

Another side effect of the pills I was taking was that with blood thinners, you usually get poor circulation, so my hands, feet and even nose would constantly fall asleep. I was fortunate though that I didn't get itchy legs after taking a hot shower, which is really common with PV. So I considered myself lucky to only have the symptoms I did have, which were improving as my body adjusted to the medication.

So I looked forward to a healthier summer, getting my strength back and getting used to living with a blood disorder.

A Long Journey Home

December 30 I was released from the hospital, and quickly we headed back home which was a good 5 1/2 hour drive away. I was on some new meds which made me incredibly thirsty so I chugged a good 2 litres down during that drive.

We got to the little town where we were renting a house and I went straight to bed, exhausted. J started packing a few things into the truck, so we could leave the next day for the 12 hour drive across Saskatchewan into Manitoba where we had decided to move in with his mom for the time being. Thankfully all the necessary things we needed fit into the truck, along with us and our 3 cats. We had a roommate living in the house with us to keep an eye on the rest of it until we could get a moving van to haul it all back with us a couple weeks later. So the next day (New Years Eve), we headed out on the long trip hoping to get there at a decent time.

We probably would have, too, if I didn't need to drink so darn much water, we stopped at every single gas station along the way just so I could take a bathroom break! I drank 3 litres of water during the 12 hour drive.

My new medication included Acetazolamide, which was to help with the pressure on my eyes, and was also a diuretic. Warfarin, the blood thinner in pill form that I will be on for the rest of my life. And Hydroxyurea (Hydrea), a pill form of chemotherapy to keep my blood counts normal. All of these caused a lot of fatigue on top of the fact that I'd just spent 3 1/2 weeks with no activity lying in a hospital bed. So I was a pretty tired gal for awhile!

We made it to J's mom's house at 11:50pm. Just before the official New Year began. I didn't stay up till midnight, I was too tired after the long drive, but I did say to myself, that this year would only get better from that point on.

Learning a Big New Word

Finally it was time to have Christmas up in my hospital room (which was shared with 3 other stroke patients). Actually it was kind of fun, J came to visit as soon as they allowed, we had lunch on my cot, and shortly after that who came for a visit but the big man himself! Santa came by and handed us a couple of little reindeer-beanie baby type toys that I thought were pretty cool. J apped a pic of me and Santa before he left! It was cute.

I was happy to have celebrated with my aunt and mom a couple days before Christmas, because they had to leave to get back to Manitoba for work etc after the two weeks they spent with me. And at this point I was getting a day pass to explore Calgary a little every day. (And no more laxatives!)

J and I spent a lot of time at the Chinatown area, went out for dinner, visited my cousin from Edmonton, another cousin and his fiancee a couple days later, and really tried to enjoy ourselves after all that time being sick and miserable in the hospital. Unfortunately my eyesight was so poor that I couldn't see the mountains in the distance from the city, but I did see a lot while we were out in the malls and looking for nice Christmas lights up and down streets.

I think it was around Dec 27 that I finally got my diagnosis from the doctor. I had never heard the term before: Myeloproliferative Disorder. Now this was a word I'd get to know a lot better in a very short amount of time, because for me, not knowing what I'm in for is simply NOT an option!