Tired

I find myself absolutely exhausted. I wake up tired. My muscles have a constant dull pressure/pain, especially in my biceps, triceps, and shoulders. I also feel it in my legs sometimes, but not as bad. But it seems to progress (didn't feel it in the legs before). The feeling is the same as the day after a good 3 hours workout, but its constant, 24 hrs a day.
It doesn't matter what I do, I always seem completely drained out of energy. Even when I wake up, i'm tired already.

On the good note though, the nausea has considerably decreased - which is pure awesomeness. I can now have the pleasure of eating. Ah, the things we take for granted.

I keep pushing myself though, always doing something active. Going to theater shows, teaching Tanya how to drive - shes doing great, and visiting friends.
My oncologist called me today, to check up, said I should try to stay active, so my muscles and bones don't dry out. So I guess I'm doing the right thing.
I googled and found many people saying that lots of potassium helps with the muscle pain. So I will eat lots of potassium rich food and will let you know how it goes.

Also I received the good news from Ontario Works - they approved my application, so I should receive some moneys soon. And I've done all the paperwork for Ontario Disability Support Program so far, we'll see how it goes, should be around 4 months before it gets approved.

First day of no steroids!

Finally I can wake up without taking the damn steroids. I been waiting for day for a while now. I actually felt a lot better yesterday already, nausea & sleeping wise.

We've been having some strong winds here recently, and I think I might be catching a cold. Which is really not good. So I started drinking 1-2 Tylenol extra strength a day, whenever I feel a headache or a sore throat. Also ate 3 garlic heads yesterday before I went to sleep, that should help.
I even started wearing Tanya's scarf when I go out because I cant find mine. Getting sick right now, even with a small cold could have really bad consequences for me due to my lowered white blood cell count. I measure my temperature 10 times a day right now, if it hits 38C, I have to go to emergency room.

I seem to be experiencing extreme tiredness in my arms (biceps and triceps) and shoulders. I'm monitoring this symptom very closely, because chemo can cause permanent numbness in some parts of the body. I hope this isn't it. If anything, I already know my oncologist's phone number by heart.

Overall, I'm quiet happy that I been able to get somewhat normal sleep lately.. going to sleep around 2am, and waking up at 8am, and sleeping pretty much uninterrupted.

I still feel completely exhausted by 9-10pm. But this gives me time to explore new things to do at home. Tanya started reading me a very famous Russian book, something I would have never do on my own. Still working on figuring out my electronics project that I want to do. But I got plenty of time for that!

Day 1 after chemo #2

Yesterday I been feeling nauseous all day. Finally I let it rip in the evening. I think I puked out everything that I've eaten that day. I felt so much better after thought.. finally some relief.

I even felt asleep for an hour two. Spent the rest of the night rolling around the bed, till finally 6:30 am I woke up and started browsing the net. Trying to find out if I should fight the nauseous feeling or just surrender to it. The body probably knows better than my conscious self what it needs to do.

In the meanwhile, I will be drinking lots and lots of water and tea to prevent dehydration. If I feel alright today, I'll try to visit my doc and get that prescription for medicinal marijuana. I'm hoping it will kill the nausea and give me back the ability to sleep.

Also, when I was receiving my chemo, the nurse said that my white blood cell count was low. That means the chemo is doing it's job and I should really be careful and avoid public places, as I can get infected a lot easier now.

Chemo #2

Had my second chemo today. The nice part is that Canadian Cancer Society got me a ride there and back for free. The crappy part is that I've already taken the sleeping and nausea pills, and 1 hour since I still can't fall asleep and feel nauseous.

Symptoms are the same as during chemo number. Feeling very very tired. Feel like you just went for a 2 hours walk, came home and took a bath and want to sleep --- but can't. I think its from the Prednisone (steroid).. if that's the case, then my next 5 days will be very similar like last time. With the exception of sleeping pills not working.
Feels like there is a war brewing in my chest. I feel the nausea, then something tries to minimize the feeling, then it comes back. It's like the pill is struggling to work.

I think I will ask my doc for a medicinal marijuana prescription. I've asked the nurse weather a lot of patients use it.. she said yes. I hear that it helps with the nausea, sleeping and eating. I rather take some grass then 10 different pills.

Today's chemo lasted about 4.5 hours.. longer than the 2-3 I was promised.

It's 1:00am now, way past my usual bed time of 11pm. Sitting here, and exploring new ideas for a new hobby of mine.. soldering/electronics. I think I want to build something flying and remote controlled.

Im Bald!

Well that day has finally arrived. My hair was falling out fairly quick, but what made shave it off is the sensitivity of the scalp. I could not wash the hair, because it hurt a lot. Could not even wear a hat or even lay on a pillow. 

So it had to go.

I did have some fun with it and of course made some pics of it for you all.

The beard is also sensitive and slowly falling out. But I wont shave it till I have too. It's been growing very slow and it took me years to grow that!

Tomorrow is my check up appointment with my oncologist. My biggest complaint at this point are my mouse sores... eating becoming very hard. Whenever I rinse its extremely painful.. I will ask for a prescription rinse  that many recommend. 

Energy levels are up!

Hair falling out!

About an hour ago I was sitting, and just feeling my hair, when I noticed it started to fall out. There are no words to describe it, so I made a little video, so you can see exactly how it is.

I will have to start doing my haircuts sooner than I thought. 

I am not worried about this at all, as I never had great hair. In fact, I will be looking forward for my new hair. There is a chance that it will be slightly different color and texture.. I think it can only get better!

p.s.

Happy Valentine's Day!

the sound is very quiet .. so make turn up your speakers a little.

Mouth Sores!!

The mouth sores are starting to be a real problem for me. I got a really really bad one on the lower jaw between the teeth and the lip. This makes eating an apple or anything where you have to bite off a piece a real nightmare. Even laughing right now is really painful. It doesn't really hurt, more annoying, when I don't open my mouth or smile. But when I do.. on a scale 1-10.. I would say its a 12.

Today my hair on my head started to hurt when I touch it or wear a hat. It's not very painful, about 4 out of 10. This would be time when my hair should start falling out.. about 2-3 weeks after first chemo.

Lynda, my friend's (Justin) mom, mentioned about the scalp hurting before the hair falls out... I guess this is it. I will start looking for funny and cool haircuts I can try before I shave it all off.

I've also been in contact with CancerCare - a really great organization that offers free rides to the hospital for chemo and other appointments. They also connect cancer patients and their families together, so that newly diagnosed can learn tips and ticks that will make life easier.

Also I contacted WellSpring - also amazing organization that helps you file all the necessary paperwork to get financial assistance from the government. They are in regular contact with the government staff.. and are able to make your application process a lot faster.

I am very happy that I live in Canada, and would not trade out healthcare for any other in the world. I never expected so much support from different organizations and government.

Update report

Good stuff:
I noticed that I have stopped itching.. yay!
My sleep has been getting a lot better.
My apatite is a lot better, in fact it seems that I cant stop eating.

Bad stuff:

My spleen has been hurting a lot more lately. Sometimes its continuous pain and sometimes its pulsating. I find that early in the morning the pain is either not there or very small. In the evening it seems to intensify. My doc said to take extra strength Tylenol, it seems to sorta work.. reduces the pain but doesn't eliminate it.

Also when I breath, the pain seem to go from spleen to my left shoulder.

There is a pinpoint on my right side (liver side) where I get even stronger pain than the spleen.



I went to see the doc today, he said my spleen seems to be smaller (good thing) but the fact that I have pain its a bad thing. We did a CT scan, and should have the results soon. He promised to call me with the results, if he wont, I have an appointment on the 17th.. I'll know more then for sure.

Overall, I think my condition is improving..until the next chemo probably. I rather have pain, which I can still tolerate, than feeling nauseous, itchy and sleepless.

At this point I have stopped taking the sleeping pills. Just eating Tylenol like M&M's.

Back from Niagara Falls

The trip was amazing! The temperature was +10c ... whoever doubts global warming.. this is proof.

First we hit the wineries for some wine tasting ( I only had 1 small sip), everyone else had a sip and then some.

We got a nice bottle of wine and went to the Great Canadian Cheese Factory. Also bought some salami and buns on the way. We ended up having a picnic near a farm.. there was a pony not to far from us. 

I didn't even feel nauseous or any pains at all. Then, we finally got into our hotel room, on 20th floor facing the falls.. really really nice. We went to The Keg .. a pricey place known for its steaks. Ordered a bunch of appetizers for the 80$ worth of credit we had. And I had a $41.00 + tax (13%)  steak... T-Bone.. which was nice and soft, but I certainly didn't taste $41.00 worth of awesomeness. It was comparable to $15 steak at your regular bar. 

By 9pm I started having some spleen pains, especially when walking or doing anything active. I noticed the bump (enlarged spleen) came back. It was it manageable pain, but still a lot of discomfort. When I was taking Prednisone (steroid pills), I remember noticing that the spleen became a lot softer and smaller in size. And I defiantly recall being relieved from the pain. 

I will ask my doc on the 17th (my bday) about this. But as off right now, the pain is pretty much continuous at about 6-7 out of 10. Sometimes it spikes and reaches 10. I also started having sore throat and sensitive teeth. No fever, I measure it 10 times a day.

Then we took off to Dave and Buster's, we had $80 worth of credit to spend there.. that was pretty fun. By 9 or 10pm I felt enough pain that I had to go to our room for the rest of the night. I was very very tired also.

Next day, since morning, the pain stayed there at the same level. Sometimes I would not feel much, but still discomfort.  I also find myself sometimes being disoriented a little, my gf confirms this also. Happened few times last couple of days. Had a little bit of issue answering a question. I also lost some more weight, about 2kg. Now I weigh at 80.00 kg, which is a new low for me. Still room to go.

Overall, I guess the symptoms are a bit worse. But it still beats being nauseous in my opinion.

On the way, we stopped at our friend's Mama's Pizza. He made us one delicious pizza which I still can taste in my mouth. Took us a while to get home cause we got stuck in traffic.

But Tema (cat) was very glad to see us. And it was well worth the drive.

p.s. if anyone has any advice on the mouth sores, please don't hesitate to comment.

First Day of No Steroids!

Woohoo!

Finally no more steroids. I hope that will make my day a little better.
Yesterday I felt a bit bad - the sensation of being restless and tired. We went for a walk, but the spleen started to ache a bit, and we turned around. Still, was nice to get outside for some fresh air.
My appetite seems to be coming back, Tanya made delicious pasta yesterday, even asked for some extra.

I find out that I feel nauseous almost at specific times of day. I will keep an eye on the times, and see if I can make a schedule, then I can take the pills like 30 min in advance.

Tanya also bought me the Steve Jobs biography book, it seems to be really good. I cant stop reading it, though I never was a reader. So, I guess that's a positive outcome out of all this situation for now.

The hair is still there, attached firmly to my head and other parts of the body. I am having hard time imagining it would just start falling off - Tanya sometimes pulls really really hard on it, and it wont come off.

Today we are going to Niagara Falls - yay! We are planning on hitting some wineries on the way because there is an Ice Wine festival or something going on. I wont be drinking any, but sometimes they decorate the wineries really  nice. So it will be a treat nevertheless.

Gotta remember to take the nausea, sleeping pills and my thermometer!

Our poor cat Tema will have to stay home alone for a night :( But, he been having so much company lately, I think he would appreciate chilling alone for a night. We told him no parties after 11pm.

Day 3, a little better!

This is day 3 and I feel a little better. Yesterday I had the doc prescribe me some sleeping medicine (Lorazepam) and it did magic. I think I slept about 9 hours in the same position it knocked me out. Today, I don't have black spots under my eyes from lack of sleep.  The pills are so tiny, makes me wonder how they can deliver so much punch. 

Here is a pic of it:

Also, I noticed that my spleen no longer hurts as much.. I can even sleep on my left side now. I do feel nauseous after I take Prednisone steroids. But I got only one more day left to take them! Hope I will feel better after that. 

My hair is still firmly attached to my head. Tanya (my gf) makes sure to check it every day by pulling pretty damn hard on it. Sometimes she does it when I'm still asleep! 

I am losing some weight, but that's probably cause of no eating. I hope once the nausea feeling stops, I will start eating again. But I sure could lose another 10lb to bring me to the appropriate weight I should have.

Today is Friday. I hope I can feel alright to visit some friends, if not they said they would come over.

I got big plans for Sunday, we are going to Niagara Falls with some friends. We bought a good deal on DealFind (groupon like site). That gives us falls view hotel room, with casino money, dinner at The Keg, and some money for Dave and Buster's. 

So I am looking forward to that, hopefully I will feel alright!

Happy Weekend everyone!

Day after chemo + more info about me

I got a minute right now. So I thought I'd tell you how things going so far.
I did not get much sleep at all. I was laying in bed for about 3 hours with my eyes closed, but just could not fall asleep. Only at about 4am I finally got some sleep.. sorta. Was rolling all over the bed, but at least something nevertheless. I woke up at 8am... immediately ate some cereal and took the 2 Prednisone pills. Hopefully by evening they will finally edge off and let me have some sleep. Otherwise, I'll continue to be a zombie for however many days it takes.

I also have moments when I feel nauseous, but i quickly think of something else and it seems to do the trick. I still haven't tried the anti puke medicine they gave me (Prochlorazine). It says on the label that its dangerous to drive a car with it, cause it will make you feel like your on LSD. I am also kinda hoping that my doc will give me a prescription to medicinal marijuana instead - kinda have more faith in it.

I've decided to tell you a little bit more about myself. I work as a day trader from home. I trade the commodities markets such as oil. Mostly, I trade the Emini SP 500 futures. I've been doing this for about 3 years now, but only recently enough to call it a decent income. I think this job suites me extremely well right now, because I do it from home.

I am or now more appropriate was, considered among my friends to be a healthy guy. I rarely got sick, and I avoided medicine like Advil and Tylenol most of my life. In fact, I must have taken less than 5 pills in the last 5 years prior chemo. I always let my body fight the little viruses I did catch. Never had a flu in the last 3 years. Never did the flu shot either. I eat a lot of home made food, with lots of veggies and fruits.

So this did come as a shock to me. But I  don't blame anyone or anything. Although, I did live in the town that was one of the worst hit after the Chernobyl nuclear meltdown accident. I was 1 years old at the time of the accident. Continued to live there for about 5 more years. But, from my research on the subject, it appears to be that most kids that did suffer cancer, did so at the age of 5-7. But who knows, right? Point is, playing the blame game wont fix anything. Just have to deal with the current situation. Concentrate on the positive, and never give up, physically nor mentally.

I know this sounds cheesy, but it really really really helps to have the support of your family and friends. So if you are thinking of weather to tell your friends or not. In my opinion, do it, the earlier the better. They will make your journey easier. At least they do it for me.

Its February 1 2012 1:47am - my first night after chemo.
I've been tossing and rolling in the bed the whole time trying to fall asleep, but just cant. Its the worst feeling - tired but can't sleep.  It's not that I am thinking about it or anything, I physically cannot fall asleep.

They told me the steroids - Prednisone - I have to take, 2 each day, for 5 days staright after first day of chemo, can cause issues falling asleep. Is this it? or is this just another general side affect of R CHOP chemo?
I hope it is just for 5 days...

This is the story of all about how, my life got flipped all upside down!

My story started about 4 months ago with a very mild pain on my left side, at the bottom of the ribs.
On a scale of 1-10, 10 being the worst pain imaginable, I would have to give it about 3. It rarely bothered me, sometimes it gave me troubles sleeping on my left side.

Eventually the pain progressed, and appeared to be present whenever I did something active, such as going to a jog. At first I didn't consider it to be anything major. I was overweight (about 96kg and 171cm tall). I just moved in with my girlfriend, who pushed me to get off my big butt. So I thought, it was just my body getting used to exercise. I started losing weight. Again, I was thinking that my diet changed since I moved out + I started exercising.

The pain would not go away, but it would not get worse either. One day I decided to go to a walk in clinic to get it checked out. The doc said it was muscular pain, which I found to be odd. She told me it should go away within few days, and that I should stop exercising for a few days. So I did. But the pain did not go away.

That's when I decided to make an appointment to my family doctor. When I came to see him, he said he could feel my spleen being firm and oversize under my ribs (he actually pushed his fingers under my ribs, ouch). He told me that it's not good, and ordered a barrage of tests including X Ray, Ultra sound, CT scan, blood tests, urine tests. When all the results came back, they showed some lesions on my spleen, and 1 slightly enlarge lymph node near my pancreas.

My family doctor told me right away that its lymphoma, a term I've never heard before. He said not to freak out, which concerned me, but said it can be cured with some medicine, after which I didn't think of it as much.
He then sent me to a hematologist for more testing. That appointment must have been 3 weeks away.
Meanwhile, I started looking for reasons for spleen enlargements. It must have been 2 days of searching until I finally found lymphoma as the reason, and remembered that what the doc said it was.

That's when I started worrying a lot. The worst part was not knowing. I just knew tiny bits about chemotherapy, mainly the really horrible side affects. To be truthful, I almost had a breakdown. I wanted to avoid chemo at all costs. I started reading about alternative therapies. But unfortunately non of them offered any hard proof of success. That's when I started looking at chemo, learning everything I could about it. The terminology is tough, but my girlfriend is a biotech major, so she helped a lot deciphering the code.

I concentrated on credible sources of information like American Cancer Society and Leukemia & Lymphoma Support Foundation of Canada.

Meanwhile, I was lucky to be transferred to another hematologist/oncologist at the Princess Margaret Hospital.
This pretty much the cancer hospital in Canada, and one of the best in the world (Canada spends almost all of its medical research budget on cancer).

On the very first appointment with Dr. Michael Crump at PMH (Princess Margaret Hospital). We did a bone marrow biopsy(ouch), and scheduled a spleen biopsy. By this time, I already had the symptoms of a lymphoma. I lost weight (about 12kg), loss of appetite, and can barely do anything that's very active because of the pain. I also itch like crazy. And my spleen grew to the size of about 2 golf balls, and can be easily seen with naked eye, as it is already coming out from below the ribs.

I had the misfortune of doing all of the biopsies during the holiday season (Christmas and New Years). That made the wait time unbearably long. I think it was about 3 weeks before I got my bone marrow biopsy back. Which showed negative for lymphoma (boy was I happy). Shortly, it was time to do my spleen biopsy. Once on the operating table, the surgeon decided not to go for the spleen, but go instead for the lymph node near the pancreas. I said do what you think is best. Because operating on the spleen can cause it  bleed, and could result in removal of the organ.

The results came back shortly after, INCONCLUSIVE! how torturous! ahhh!. That means I have to do it again. On the next appointment with Dr.Crump, he surprised me when he told me that he wanted to do another bone marrow biopsy, this time the left side. I was not happy. But I agreed, I needed to know what it was ASAP. He expedited another spleen biopsy appointment. And made sure that the head of pathology department of the hospital (Toronto General) analysed the sample.

3 days later, I was back on the operating table, and this time they did go after the spleen. Everything went smooth. I think it was about 1 week after the biopsy, when they called me and gave me the results of both biopsies.

The bone marrow biopsy showed fibrosis, which is indicative of early lymphoma activity.
The spleen biopsy did show Diffuse Large B Cell Non Hodgkin's Lymphoma.

 I did not know how to react. All I could think is how do I go about telling my parents. I am the only child, and they both had mothers die of cancer. This would kill them. The only thing I had going for me, is that they were in the process from the start. And I kept telling them, that according to statistics, there is 90% cure rate. Just to prepare them for the worst possible scenario. It helped them a lot. They took it a lot better than I thought they would. I am happy.

They told me that the next day I would have chemo... great and not so great. Chemo can make you sterile, although it happens rarely, I do not want to risk it. I rushed to the sperm bank, and they said they can only do it tomorrow.. the day of chemo, which is at 9am. However, they were supppppppper nice about it, and said they would open the clinic just for at 7am! Thanks Mount Sinai!

Today is is January 31 2012. After a rough night of almost no sleep, I woke up at 5:45am. 6:15am the taxi was already waiting for me to drop me off at the clinic. Everything went fine.

Then it was time to wait for the chemo, about an hour and half. I was nervous. But my girlfriend was there for me, she calmed me down.

This is the pic of me getting my first R CHOP chemo!

It went fine. I just feel super duper tired. But thats because of lack of sleep + the nurse giving me benedryl which sent me to sleep, and she kept waking me up for blood pressure and temperature tests. Every 10 min!!


Its 8:52pm right now, and I am about to go to sleep. Good night!

p.s. I promise not to make such big posts in the future.

The next appoitment up on the menue is a follow up with Dr.Crump on my birthday! Feb 17.
I will let you know how that goes.
By the way, the R CHOP chemo is given every 3 weeks, for 6 cycles.