Friday, December 21, 2012

Lessons Learned

I want to make a list of things that I learned through this experience, something that perhaps can help you or you loved one who's in a similar situation as I was.

The first thing I should probably mention is you will have a ton of relatives and friends, and probably read a lot of stuff on the net about some natural cancer cure that has no side affects and that the government is hiding it for $ purposes or whatever other conspiracy. Get that out of your head--FAST. If there was such a cure, first of all you would find lots of statistics about its effectiveness.. and you wont.. cause I did a LOT of research, everything from Gerson Therapy, special tea, rubbing honey on the cancer spot, or seeing some crazy shaman  to sticking a cucumber up your butt while it still attached to the bush.... yeah that exists out there. As for responding to your loved ones... tell them you will consult your doctor about it. Don't be angry at them, they are just very worried and are trying to do everything they can.

Get some hobbies that you can do at home. Like painting pottery, puzzles or other crafts. It might sound silly to you now, but, you will be spending a lot of time at home. And that stuff actually helps to focus on something else than being sick. And it helps time to pass by quickly-- something thats very important in the first few days after the chemo injection.

What helped me a lot was the fact that I asked Tanya to keep some pressure on me on home chores.. taking out the garbage, doing some vacuuming...etc  It made me feel less useless, which was good feeling. But she was gentle enough to see when I was really sick and did all that herself. The loved ones will have to know the balance when to push and when to stop.

You have to be positive. In my case, the survival rate was above 90%... Thats way more than I ever got in school in terms of marks. Do your research, ask your doctor all the arising questions.

Marijuana... What I call the miracle drug. It made the whole process soooo much easier. You should first ask your doctor about it. But to me it was a life saver. If you are a conservative parent or caregiver who does not believe in "drugs". Fuck off. This is not about you. This is about someone who will be puking their guts out, just because you don't believe in it.  If you are the patient and dont believe in it.. its time to be selfish and do what helps you. If I would be very stubborn.. I would have a cucumber up my butt right right now with a shaman rubbing honey on my stomach to cure my cancer.. Or if the anti nausea medicine they give you works.. go for it.

Its been some time now since my last chemo.. what to expect:
Prednisone stays about a year after you take the last pill. It makes your body store salts and water. So expect disproportionate weight gain. By that I mean, gaining more weight than you eat. Docs will tell you go easy on the sodium rich foods and water. I gained about 40lb while not eating more that justify anything above 20lb gain.

Looks like I got some nerve damage .. pinky and ring finger on left hand still feel tingly, and so is my toe on the right foot. I will ask about that during my next check up in mid Feb. But as far as I know, it either fixes itself or it doesnt.. Thats a chemo side affect.

Also writing this blog has helped and is helping me a lot. I was surprised how many followers from all over the world I get. Maybe you should start your own too!

feel free to email me with any questions: boolka@gmail.com

see you guys later!

Friday, November 9, 2012

CT Results are in!

Hello hello!

The ct scan results are back. They are clean as if mr.clean cleaned it!!!!!! This is excellent news!
Looks like I finally kicked the cancer's ass! Weeeeeeeeeeeee!


How do I feel now:

I still get pain in my spleen, quiet often, but not consistent. The spleen is normal size and spot free.. so its nothing to be concerned about at this point.

I gained all my weight back.. 200lb again. On this note, I went to the gym yesterday. Very noticeable difference in my strength. I used to bench press 265lb, now I can only do 135lb. But I am planning on signing up, and going there regularly.

I still feel tingly feeling in my right toe, sometimes it causes me discomfort to step on it. This is probably due to nerve damage by the chemo. My body supposed to fix it on its own, nothing can the docs do.

My hair changed for the better, where as I had curly and thin hair, now its thicker and straight. I still like it to keep it short, even bought a trimmer to cut it at home, Tanya helps.

What else? hmm.
Appetite is normal, although there are still days when I do not eat much, but mostly its cause I don't move much. With gym, I think that should change.

My teeth seem to be more sensitive now, not horribly sensitive, but it does get in the way at times. I will be checking that out with my dentist soon.


In about 3 months, I will have a check up with the oncologists, to make sure no lumps grow anywhere. If the cancer does come back, it will statistically do so within the first 2 years. Doc said there is about 30-40% it can come back, but he was hesitant to give me a number, I really had to squeeze it out of him. So crossing my fingers, not concentrating on that at all. Trying to live the life.

Thursday, October 4, 2012

It's been a while!

Its been a while since I last posted. I apologize for that.

So I've concluded my last 2 chemo sessions. They were typical, feeling crappy for the first 8-10 days, mouth sores..etc.
After about 3 months since my chemo #8, I had a PET Scan. The following week was a tough one, its the week of waiting for the result.

The result was not as to what I hoped for. There was still some spots on my spleen that lit up on the scan.
I actually got pretty upset and maybe even depressed for a couple days. But, I didn't let it out of control. And made an appointment with a councilor at the hospital. It took a lot out of me. I had to say out loud all the bad things that were going through my mind. And that was extremely hard for me - I am not a big talker when it come to my emotions. When I came home, I cried like a baby. But I felt better the next day. A lot better!  It felt like a 1000 stones were lifted from my shoulders.  Will I go again? No! But did it help? defiantly.

The doc, ordered another spleen biopsy.

The samples taken showed only dead cancer!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The timing for the news could not have been more perfect, as when the doc called, me and Tanya were just heading out to Tobermory for a couple days of vacation.

I been gaining quiet a bit of weight, and defiantly more energy. I can finally be able to stay out till 3-4am!
More importantly, I finally could that what I didn't have for almost a year-- BEEEEEEEEER! It was everything I thought it could be and so much more!

What happens now? Now I wait. I have a CT scan coming up on October 24 I believe. I gotta double check that. With results following about a week after. Will report on the results... I promise.

Tanya started her school, and I am about to start trading again. So we cut hard on the 'medicine', which was not hard at all! So anyone thinking its addictive.. I say otherwise! But, I do enjoy one everyone now and then, its truly a remarkable experience. Tanya says I became wiser, I say its the weed!

Hopefully this is the end of this story.


Monday, June 4, 2012

Update!

A lot has been happening in my life that prevented me from posting including a fair share of laziness.
I been helping my parents sell their house and buy a condo, and move to a new bigger apartment myself.

I have concluded my 5th and 6th chemo treatments. They both were less than pleasant.  Still fighting mouth sores from the 6th chemo.  I don't know what I have to do to avoid them. I been brushing my teeth 3 times a day and washing my hand like 6 times a day.  Still got them.

The ct scan from my 3rd chemo showed significant improvements along with some bad stuff. The good news is that my spleen and the lesions on it have significantly decreased in size. The same goes for the lymph nodes. But they were still abnormal. The bad news is that they suspect that I have lymphoma in parts of my spine T3, T9-T12 vertebrae, and on a couple of ribs. When I asked about that, they told me that it was there from the beginning, but nobody told me about that.

Today I got the news from my post 6th chemo ct scan. Again, progress ... lymph node shrank in size from 4.5cm to 2.9cm ( 1.5cm is considered normal, anything above is not normal). And my spleen with the lesions on it shrank. This is all great news, but not good enough. I was hoping to be done. Instead I have to do 2 more chemo sessions, 8 in total.

My overall energy is way up. More than I had before I started chemo. Obviously this is only in between chemo, but still noticeable.  It's finally harvest season, and I been able to get my hands on some good organic marijuana, that's been given as much personal care as Kobe Beef. It really makes a difference. Special thanks goes to that person, you know who you are.

I am mentally strong as ever. A bit bummed out but not giving up. There is no choice but to remain strong.
I am not sad. I am not scared. I do not regret.

This whole experience made me a better and stronger person. If I had the choice, I would not change this part of my life.

Saturday, April 21, 2012

Im back!

Sorry guys that I haven't posted anything in a while. I have been keeping myself very busy, and my computer dying on me didn't help either.

First thing first, the radiologist report came back and confirmed what the doc said. The tumor is shrinking and so is the spleen! But, the doc said it is still too early to say if I need additional chemo after the 6 sessions are done. I will have a PET scan after the 6th.

This round of chemo I've been a lot better than the previous sessions. Perhaps it's because I been "medicating" non stop for the first week or so. It's actually kinda hard to be high all the time for a week. And I was glad to be off it for the last 10 days or so.
I have been experiencing extreme fatigue and weakness last 2 days. But I kept pushing myself to do a lot of chores. Which sometimes lets me forget that I'm tired. With the computer down, my productivity went up 2343% I am kind of glad to take a break from it.

Tanya started a new job, in a place that's way up north. I get to drive through the country side, which for me, is better than any medicine. On the way back, I slow down, and enjoy the fresh air, and the scenery. It's practically narcotic for me. I feel like I'm on top of the world for that moment.

The extreme sensitivity in my lower teeth seem to fade a little. But I started bleeding from my gums easily.
I will bring this up with doc when I see her on the 23rd. From what I have read there isn't much they can do about it. And it's nothing big to worry about at this point.

If 6 sessions all I have to do, I am planning to put myself through the Spartan Race in Toronto in June.
If you haven't heard about it, here is a little video of what it's all about:


And I am planning on winning it!


Monday, April 2, 2012

Check Up Before Chemo #4

Today I had the check up done. Everyone around me was nervous about this day. I for some reason was very calm.  Waiting for an extra hour and 20 min or so past my scheduled time didn't make it any easier.

I had a number of things I planned to find out: CT scan results, the issue with the teeth sensitivity and decay (got 2 little holes that I can see), loss of appetite, my coughing + ear pain when I swallow, and a diet plan.

CT scan showed that the tumor on my sleep has considerably shrank. YES!!!! (but expected, since I no longer have the 2 golf ball sized lump). But the radiologist hasn't completed the report on the scan yet, so all the details are not known. For example, I don't know if the spot they saw on the liver has disappeared or not (if it has, then it was lymphoma) I am supposed to give them a call in few days to find out the full report.

About the teeth - She was surprised as she, the doc on Dr.Crump's team, never heard of that being a symptom of chemo. I told her that from my research, it's not a common symptom. That's when she decided to ask Dr.Crump, who said he encountered it only a few times. He said that there is nothing he can do, and recommended that I see a dentist.

When I asked about the loss of appetite, I was surprised. I was told that "hopefully prednisone (the steroids) and marijuana will help with that." ...I know... I know..

@#$%^
...I know.

She checked out my ear and my throat. Looks like its clean. Doc said that if it doesn't pass within a week to call them. I think I won't wait for that, and schedule an appointment with my family doc. I want to be sure 100%. I think the family doc encounters these types of problems more often than an oncologist.

I should be eating everything I want pretty much. There is no special diet to follow. But from my research I should be avoiding acidic foods like oranges, apples, and lemons. I've read that it helps with oral issues. However, it was from forums and nothing like Cancer Society or a gov website. But then again, its not hard to try and it just might work!

I will be scheduled for a PET scan after chemo #6, at which point I will know if I need any more  chemo or not. I really am crossing my fingers here.

I am ready to go to chemo #4 tomorrow at 10am.

Wednesday, March 28, 2012

Sorry I haven't posted anything for a while. I got busy with some stuff, and felt bad on other days where I just didn't want to get up from our new comfy couch.

I got an interesting new symptom. I got an area on top of my head, slightly to the ride side, that is very sensitive.   It's about a square inch in size and does not differ in color or texture. Just sensitive when I touch it.
I also noticed that my front lower teeth, specifically 3 of them, are also sensitive. Sometimes they feel tingly and numb.

I have caught a small cold. My throat hurts a little, and I a cough a lot. There is no temperature, I check it often.
Hopefully with some old school honey-tea-lemon therapy this will go away.

Status update regarding my marijuana licence:
I've sent all the documents needed to the compassionate care  center of Toronto. They said everything will take about 2 weeks to process. And it still be illegal officially. The only way to make it all kosher, is to go through a minimum of 12 week waiting period through the gov. I asked if there is a way to speed up the process, and the lady at the gov agency told me that only if the doctors says that I am terminal.

The compassionate center should hook me up with some quality medicinal grade stuff regardless if I got the licence or not. :-)

Below is a pic of all the medicine that I used to take to combat the symptoms. None of the drugs effectively combat the symptoms. You also see a joint, half of it is just a paper filter.. there's not much marijuana in there.. maybe 1/5 of a gram. And it does an amazing job of taking care of the symptoms.




That being said. I am extremely upset at my government for making such a hassle to get a licence. I mean if a doctor says it helps, not just the patient. What business does a politician have in preventing it from being accessible in a controlled manner, just like any other prescription drug.

Ok, I am done venting!

I got a ct scan coming up on the 30th, with doc appointment soon after, and finally chemo #4 on April 3.
Hopefully, the doc will say that everything is going as it should and that 6 chemo sessions is all that needed. I am really crossing my fingers for that. I am really not looking forward for my next chemo. But I've made it this far, not going to quit now!

I will let you guys know how my ct scan goes asap!

Tuesday, March 20, 2012

I finally feel a little better today, enough to write a new post. I have never been so exhausted like I was the last few days. Not even, after 10 hours digging holes in the ground with a shovel. I had a nice 10 hour sleep today, without any marijuana. Spent most of the morning outside today, its a very sunny day outside.

I am ultra sensitive to smells. Our toilet freshener acts about the same as a bug-spray on a bug. Just lethal. I get very nauseous really fast. Next time I'll need to induce vomit, I will just smell that spray. The funny part is, that I picked it when we were shopping, before the chemo.

I am also having some sour-metallic taste in my mouth. I've read that chemo can affect the taste since taste-buds also regenerate quickly, thus attacked by the chemo. I have noticed a slight change in taste when eating, stuff tastes like water a little bit.

No mouth sores so far! I been brushing like crazy. I am really glad the sores didn't come back. I've read another's patient blog and he said he would get the sores after each chemo. So I guess I'm lucky in that respect so far, fingers crossed.




Thursday, March 15, 2012

2 days after chemo #3

Marijuana seems to do its magic as many other patients say it does. It almost eliminates any sensation of nausea for about 1.5 -2 hours. It also allowed me to sleep last night like a baby. The nausea seems to be a lot stronger than previous round of chemo. I did vomit quite a bit yesterday, just as the "high" faded away. I did feel a lot better are vomiting, but the nausea feeling came back just a couple hours later. A little bit of marijuana fixed it.

I did call my doc for a new pill for to control the nausea. I cant be stoned all day long. It's defiantly better than the alternative for now, but I would like to also have a pill that will allow me be functional for the day.

The weakness increased considerably, I just hope that it's only for the first few days and will fade away eventually.

Will I be trying to get a prescription for marijuana? Absolutely. I know that it works, and I don't know if the pill the doc will give me will work. Besides, the pill will not allow me to sleep like marijuana does. At least until I'm done with the steroids.

I have been thirsty a lot, and been drinking water non stop. Also, I increased my oral hygiene, the last thing I want is the mouth sores to come back.

I will let you know how the new pills are working as soon as I try them. Once I get a little more energy, I'll make my trip to the doc and get the marijuana prescription.

Tuesday, March 13, 2012

Getting Ready for Chemo #3

It's 9am, and I've been awake for an hour and a half already. In just about 2 hours I will be getting my third chemo. I am no longer neutral towards chemo, as I've learned to hate the side affects. But instead of being depressed about it, I've been preparing for it.





























I really hope it makes the nausea better, and gives me the ability to sleep for the next 10 or so days. If it works, I will be coming to my family doc today and asking for prescription. I really do think it will help. I am a firm believer in all things natural. Maybe it's a placebo affect, or not. I hope it helps.

I will write more often during the days after chemo.

Wednesday, March 7, 2012

Possible Digestive Issues

Yesterday I had a scare. I went to the washroom, and saw a lot of blood in my stool. This has never happened to me before in my life. I immediately called the oncologist, and had an appointment scheduled the next morning 9am (today). Meanwhile, I started searching online for answers. From my research this could a side affect from the Cyclophosphamide drug in the RCHOP regimen. That drug lowers the platelets (see through liquid in which red and white blood swim, its responsible for clotting and preventing bleeding).
I also had a day when my stool was very black, almost charcoal color. It happened once, and was fine after. I looked it up, and it seems to be a common side affect. There is no need to do anything about it right now, but something to watch.

Today in the morning I did a blood test, my platelets levels are fine for a chemo patient. My doc didn't have a good idea why it happened, but she gave me some food softeners (not a laxative)  to help with the digestion.
I was told that if it happens again, I would be directed to a gastrointestinal (GI) doc, who will put a camera up my butt, and see whats going on. I really really really hope it doesn't happen again.

I still get tired on daily basis, and my beard started to fall out. I carefully examined 1 beard hair, and it seems that the root is almost 2x thinner than the body. This falls in line with the side affects of chemo, hair thinning.

My chemo #3 is coming up on the 13th of March. I asked my doc again about trying marijuana, she was hesitant, I felt as if she had a personal vendetta against using pot for genuine reasons. The pills don't seem to work very well, of course there are other pills I can try, but there are so many and it seems the only way to find the one that works is through trial and error. Like I said before, I am against pills, if there are natural alternatives that work..who isn't? So meanwhile, I have secured some quality marijuana, and I will test it after my chemo. If it does, I will insist on getting a prescription.

I can also say that I no longer have a neutral attitude towards chemo I had the first 2 rounds. I am now not looking forward to it at all. The overall symptoms and side affects seem to be intensifying with each round. But by no means I am scared or anything. I still maintain that I have felt worse after some hardcore partying.

Also, being bald is awesome. All my friends say it looks pretty good, and I really like the fact that I don't have to brush it, and my head is dry after shower. I might actually keep the baldness after chemo.

Saturday, March 3, 2012

Chemo Brain

Chemo Brain - term used to describe confusion, inability to concentrate, disorientation. An occasional side affect from chemo drug Cyclophosphamide.

I seem to be experiencing that more often now. It usually last for under a minute, just a moment when you can't quickly form an answer to a simple question.

Two days ago I had a Chemo Brain Fart, if you will, that lasted about 20 min. I was driving to get an oil change  for the car, in an area that was known to me. I decided to cut through a plaza to avoid some traffic on an intersection, and turn right. I did exactly that, except when I drove 5 min in the correct direction I instantly felt like I was going the wrong way turned around and went the opposite direction for a few blocks, when again I felt like I was going the wrong way, turned back and went a different way at that intersection. In the end, I did this 4 times, going every way on that intersection, going a few blocks and then turning around. Finally I realized that my initial cut through the plaza was correct and I got to the oil change place.
I felt like I was completely disoriented and didn't know the right way was. Although, my driving ability was not compromised, it felt scary. I didn't even change my oil at that place because they wanted to charge me way too much. Bummer.

The day after, I had a small incident when I could not formulate an answer. That lasted only seconds, but I still noticed it.

This will certainly be up high on the list of things I will talk to my doctor when I see him.
The muscle pain seems to be more tolerable now. Could be the potassium rich food I been eating. I still get tired/exhausted  randomly throughout the day to the point where I need to drop everything I'm doing and sit down. Also, as of yesterday evening, my spleen started to annoy me a little. I would rate the pain about 4 out of 10. More of a discomfort really. But it again prevents me from sleeping on my side.

I push myself to be active by visiting friends, family and going out as much as I can. Tanya keeps me on my toes as well.

Tuesday, February 28, 2012

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.

Sunday, February 26, 2012

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!

Thursday, February 23, 2012

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.