Yupyup, one more down (12/5) and still no bigger issues in the health department.. Two tired days and numb fingers is what I have to show for, not bad! I've also tried a bit of Frisbee Golf and some cykling so far, both have been kind of bordeline exhausting but still doable! =) The bloodwork from 11/7 came back almost identical as last time, so I'm still bouncing back from the toxins in three weeks intervals and they finally took the Alpha 1-Antitrypsin test and it also came back negative. No deficiancy yet. (And I'm putting down YET here because I'll probably get it later in life anyway!)
Yesterday should've been the day of our wedding but instead of moping about it we went out in Turku and did all sorts of crazy stuff with a bunch of friends. Like a little downhill carting at the Turku ski-center and taking the city tourist-train drinking sparkling wine all around Turku! =) So it was a fun weekend with friends just like the wedding would've been! So now we can start to focus on things to come next winter.. Still aiming on February but we'll now more when I've had the next CT-scan 14/8! =)
Sunday, July 15, 2012
Thursday, June 21, 2012
Chemo 2 of 6, in the bag!
So once again I'm filled to the brim with toxins and saline solution.. As I was hoping they now know how to work my veins (or at least my regular chemo-nurse does) so no mishaps this time either! =) But how could the tube slip out when it's like 10cm up my hand-vein? (She's using the big cannula now!!) And this time it was only about 6h of which 30min was spent in the doctors office discussing my progess, which also was pretty much packed with good news. My liver is doing fine, the CRP is back to zero (don't know if it has been under 50 during the whole year) and the leukocytes have bounced back to normal since the previous treatment. So no immediate infection-risk going on! And all the other blood values are in rage of normal too. I'm fit as as a fiddle! (Well, almost..)
Today I'm going to shave the rest of my head because I'm starting to drop itchy little straws all over.. Even though I have been -almost- bald lots of times I have never done a clean shave, so this will be interesting! And I wouldn't wanna make a hairy mess in other peoples beds now that we're going to Nagu over midsummer.. This might be my first midsummer with no alcohol involved since 1993, haha! That will also be extremely interesting! =) Other than that I have no big plans for the summer, I guess lots of fishing when I get around to it and hanging around where ever life takes me. So still feeling good, but very tired.. Still: Mike 2 - 0 Chemo
Today I'm going to shave the rest of my head because I'm starting to drop itchy little straws all over.. Even though I have been -almost- bald lots of times I have never done a clean shave, so this will be interesting! And I wouldn't wanna make a hairy mess in other peoples beds now that we're going to Nagu over midsummer.. This might be my first midsummer with no alcohol involved since 1993, haha! That will also be extremely interesting! =) Other than that I have no big plans for the summer, I guess lots of fishing when I get around to it and hanging around where ever life takes me. So still feeling good, but very tired.. Still: Mike 2 - 0 Chemo
Wednesday, June 20, 2012
The bald and the beautiful?
Yup! It's a hairy business, but yesterday I started losing the little fur I still have on my head. Noticed something itchy on my neck and ran my hand over my head and found it was full of lose hair! Kinda makes it all a bit more real again.. Other than that I've had very little syptoms so far. Had one episode of feeling like crap and having a splitting head ache after a short nap, but it passed after taking a handful of pills. (Yeah, they really do help sometimes!) I also have a bunch of weird rashes that might be some kind of allergic symptoms but I'll let the doctors decide on that one. (Yeah, they do know some stuff as well..)
Also had my pre-chemo blood tests taken this morning, and hear this, no f*ck-ups!! =) One little prick and it was all over! Wohoo! Hopefully that'll continue tomorrow.. *knocking on wood and stuff* I'll probably write another update tomorrow so I'll keep this one short and sweet.. Cheerio.
Edit: My pill stash.. Take a handful each day! =) (At least 4 days after treatment)
Also had my pre-chemo blood tests taken this morning, and hear this, no f*ck-ups!! =) One little prick and it was all over! Wohoo! Hopefully that'll continue tomorrow.. *knocking on wood and stuff* I'll probably write another update tomorrow so I'll keep this one short and sweet.. Cheerio.
Edit: My pill stash.. Take a handful each day! =) (At least 4 days after treatment)
Saturday, June 2, 2012
Chemotherapy 1 of 6, done!
And still feeling.. pretty good!! I've been waiting for all kinds of symptoms now for two whole days but nothing seems to happen? Is this the calm before the storm? Hope not, if only possible I wouldn't mind feeling this ok the whole 5 months! =) So I'll call it Mike 1 - 0 Chemo, so far! Also I got some results from the PET scan and things are looking positive there also! No other tumors anywhere in the body and the one tumor had only grown slightly, laterally on the left side. The edges are very much metabolically active but the centre of the tumor seems necrotic. So I'm guess it won't be too hard to kill off this invading bastard!
Apparently my bloodwork and bonemarrow is excellent too. Pretty much every possible value is within range (normal), which is nice! (Some anomalies can be spotted but they all seem related to the cancer). The white blood cell count is very high! So maybe I can stand to lose a few when the chemicals start mass-killing my cells after a week or so. They say risk for infection is at it's highest after 7-10 days after treatments. So the second weekend after chemo I'm not going anywhere close to sick people.. Or maybe people in general? I need to get myself one of those bubbles to stay inside! =)
Next treatment is one day before midsummer-eve.. Until then, do your job oh mighty poison!
Edit: Added some pics of the X-mas tree of the CHOP-R stuff and the "mehukatti" (Hydroxydaunorubicin) going in my vein. (Makes the urine and mucus red for a while which is a little bit scary)
Apparently my bloodwork and bonemarrow is excellent too. Pretty much every possible value is within range (normal), which is nice! (Some anomalies can be spotted but they all seem related to the cancer). The white blood cell count is very high! So maybe I can stand to lose a few when the chemicals start mass-killing my cells after a week or so. They say risk for infection is at it's highest after 7-10 days after treatments. So the second weekend after chemo I'm not going anywhere close to sick people.. Or maybe people in general? I need to get myself one of those bubbles to stay inside! =)
Next treatment is one day before midsummer-eve.. Until then, do your job oh mighty poison!
Edit: Added some pics of the X-mas tree of the CHOP-R stuff and the "mehukatti" (Hydroxydaunorubicin) going in my vein. (Makes the urine and mucus red for a while which is a little bit scary)
Tuesday, May 29, 2012
I'm positively radiant!
Yeah for real, I am! Thanks to the injected isotope Fluorine-18! I went for PET scan and they apparently had to make me radioactive to see all the stuff going on in my body (looking for more tumors). When I was done they told me not go close to any pregnant women or small children, haha, yeah I think I can mange to stay away for a few hours (because that's so likely to happen anyway)! ;) But as you can see from the wiki-link, the isotope has a very short half-life so I don't think I'll be getting super-powers from this dose..
Other than being radioactive it was a hell of a day (not in the good way).. First I had an early blood-sample session at 8:40 which was supposed be done by 9:00, so I could have a bone marrow examination right after. But things don't always work out as they should in hospitals.. The nurse somehow totally failed to find a good vein and kept digging in my arm with the needle, which made me feel ill, so I told her to stop! So now we had to wait for the colour to return to my face (they told me I was a little pale), but at the same time they started calling from upstairs that it was time for my marrow biopsy. Ok, so no blood yet, marrow first! And this was a lovely experience.. NOT! They laid me down on my stomach, gave me few shots of local anesthesia, cut my skin a little and started brutally drilling the back of my hipbone. It's a funny feeling when you have a doctor putting their entire bodyweight on a corkscrew (check the pic!) looking thing while slowly drilling deeper into my bone. And you can't get anesthesia inside your bone, so once in there, it hurts! So they took a biopsy and they were supposed to extract some liquid marrow as well, but that didn't happen. She poked around for a while in there too (with somekinda weird (but HUGE) needle) but couldn't find a spot with liquids. Thank GOD she gave up after the third try!
Anyway, back to the blood-lab! For some reason they now also wanted an EKG and a urine-sample along with the blood (only you have to keep it in the bladder for 4h+ for it to count).. So first the EKG, which took ages because the nurse doing that had like graduated yesterday! Then back to the vein-digging room.. This time they got the blood flowing nicely (6 vials! New record!), but I had to lie down during the procedure because I had gotten an image of being a pussy who faints while having blood taken. Funny how I felt all good this time when they actually put the needle where the blood flows instead of trying to dig a ditch in my arm. Needless to say they didn't get a urine sample because I wasn't warned to hold my pee for 4h, so I got a cup to fill at home..
After all this crap I still had a PET scan to go to! I was booked for 10:00, which naturally didn't happen so I was there at about 10:35.. I even had to change hospital buildnings in between so quite optimistic scheduling from their part. At the PET-center (yeah, for real! TYKS 14A) I only had to fill in a form, change shirts and lie down in a bed. Then comes the next pro-nurse to take a crack at my veins because they had to insert a cannula to inject the radioactive stuff. Naturally she fails as well! The first try was on top of my hand (where I have HUGE and very visible veins), but she told me nothing was going in because she might've punctured the vein. And they also do a test with saline-solution, if it stings, the cannula is not in place. The second attempt went a bit better but she couldn't get the needle in very deep, in fact it was barely in at all, but the saline went in nicely so she went to get the isotope solution. In a few minutes she came back with a massive lead box with one single syringe inside. She injected it nice a slow and then I had to lie still for 50min!! I didn't even get to read anything because any muscle activity could make the isotope solution gather in the muscles, because the oxygen atom that is replaced by F-18 to generate FDG (Fluorodeoxyglucose) is required for the next step in glucose metabolism in all cells. The scan itself took about 30min and after that I got to go home. I think the time was 14:00, time sure flies when you're having fun.
Other than being radioactive it was a hell of a day (not in the good way).. First I had an early blood-sample session at 8:40 which was supposed be done by 9:00, so I could have a bone marrow examination right after. But things don't always work out as they should in hospitals.. The nurse somehow totally failed to find a good vein and kept digging in my arm with the needle, which made me feel ill, so I told her to stop! So now we had to wait for the colour to return to my face (they told me I was a little pale), but at the same time they started calling from upstairs that it was time for my marrow biopsy. Ok, so no blood yet, marrow first! And this was a lovely experience.. NOT! They laid me down on my stomach, gave me few shots of local anesthesia, cut my skin a little and started brutally drilling the back of my hipbone. It's a funny feeling when you have a doctor putting their entire bodyweight on a corkscrew (check the pic!) looking thing while slowly drilling deeper into my bone. And you can't get anesthesia inside your bone, so once in there, it hurts! So they took a biopsy and they were supposed to extract some liquid marrow as well, but that didn't happen. She poked around for a while in there too (with somekinda weird (but HUGE) needle) but couldn't find a spot with liquids. Thank GOD she gave up after the third try!
Anyway, back to the blood-lab! For some reason they now also wanted an EKG and a urine-sample along with the blood (only you have to keep it in the bladder for 4h+ for it to count).. So first the EKG, which took ages because the nurse doing that had like graduated yesterday! Then back to the vein-digging room.. This time they got the blood flowing nicely (6 vials! New record!), but I had to lie down during the procedure because I had gotten an image of being a pussy who faints while having blood taken. Funny how I felt all good this time when they actually put the needle where the blood flows instead of trying to dig a ditch in my arm. Needless to say they didn't get a urine sample because I wasn't warned to hold my pee for 4h, so I got a cup to fill at home..
After all this crap I still had a PET scan to go to! I was booked for 10:00, which naturally didn't happen so I was there at about 10:35.. I even had to change hospital buildnings in between so quite optimistic scheduling from their part. At the PET-center (yeah, for real! TYKS 14A) I only had to fill in a form, change shirts and lie down in a bed. Then comes the next pro-nurse to take a crack at my veins because they had to insert a cannula to inject the radioactive stuff. Naturally she fails as well! The first try was on top of my hand (where I have HUGE and very visible veins), but she told me nothing was going in because she might've punctured the vein. And they also do a test with saline-solution, if it stings, the cannula is not in place. The second attempt went a bit better but she couldn't get the needle in very deep, in fact it was barely in at all, but the saline went in nicely so she went to get the isotope solution. In a few minutes she came back with a massive lead box with one single syringe inside. She injected it nice a slow and then I had to lie still for 50min!! I didn't even get to read anything because any muscle activity could make the isotope solution gather in the muscles, because the oxygen atom that is replaced by F-18 to generate FDG (Fluorodeoxyglucose) is required for the next step in glucose metabolism in all cells. The scan itself took about 30min and after that I got to go home. I think the time was 14:00, time sure flies when you're having fun.
Saturday, May 26, 2012
It's gonna be a looong year!
Yeppers! Treatment time! Well next week really, but I can't wait for this thing inside me to start withering away instead of explosively growing inside my chest! The treatment is going to be every three weeks, a few hours at each session and the regimen is a basic CHOP mixed with MabThera (=CHOP-R). The first chemical-cocktail kills pretty much any growing cell in my body and the latter one is a targeted drug for the infected B-cells. I'm also going to be eating a load of pills for nausea, kidney-function-medicine, cortisone and stomach relaxer. But before all this they are still going to run a bunch of tests, a PET scan and also I need to have some sperm frozen in case the cell poison makes me infertile. So next week will be quite action-packed!
I also got declared sick for the remainder of the year because the treatments are apparently heavy enough to keep me from working normally. So 7 months (+ the 2 months I've already had) off work, nice lil' vacation! Guess you gotta grasp for all the positives in these hard times? My offcial diganosis is (C83.31) Lymphoma malignum non-Hodgkin diffuse large B-cell, primary mediastinal, ST IBE. But I'm just gonna call it PMBL (or PMB-NHL, because it's cool to have a disease called NHL?), Primary Mediastinal B-Cell Lymphoma! So PMBL, prepare to die!
The CHOP-R stuff is quite potent and might put my body at risk for infections and such when killing off vital leukocytes. It'll also make me lose all my hair and at times I might be very ill and weak, even so that I won't be out of bed much. But most of the time I should be able to live a relatively normal life (with no excercise or alcohol, normal my a**). But all this risk also means that I won't be dancing at my own wedding this summer, so that's a big bummer (see what I did there..? Go buy me a Hummer!)! But there will be a wedding, just not this year.. We're aiming for February 2013, I should be all clean by then. And I guess it'll be refreshing to have a winter wedding for a change.. =) Our second back-up will be springtime..
So here we go..!!
I also got declared sick for the remainder of the year because the treatments are apparently heavy enough to keep me from working normally. So 7 months (+ the 2 months I've already had) off work, nice lil' vacation! Guess you gotta grasp for all the positives in these hard times? My offcial diganosis is (C83.31) Lymphoma malignum non-Hodgkin diffuse large B-cell, primary mediastinal, ST IBE. But I'm just gonna call it PMBL (or PMB-NHL, because it's cool to have a disease called NHL?), Primary Mediastinal B-Cell Lymphoma! So PMBL, prepare to die!
The CHOP-R stuff is quite potent and might put my body at risk for infections and such when killing off vital leukocytes. It'll also make me lose all my hair and at times I might be very ill and weak, even so that I won't be out of bed much. But most of the time I should be able to live a relatively normal life (with no excercise or alcohol, normal my a**). But all this risk also means that I won't be dancing at my own wedding this summer, so that's a big bummer (see what I did there..? Go buy me a Hummer!)! But there will be a wedding, just not this year.. We're aiming for February 2013, I should be all clean by then. And I guess it'll be refreshing to have a winter wedding for a change.. =) Our second back-up will be springtime..
So here we go..!!
Wednesday, May 23, 2012
Houston, we have a Cancer!
Ok, so the Pathologists finally got off the golf course and back to the lab and now I have an exakt dignosis. I'm not 100% sure yet (medical lingo you know..), but the tumor seems to be a large B-cell NHL (no, not the hockey league), which is situated in the mediastinum, which is the hollow space between the lungs, heart, trachea and other such semi-important human-parts within the ribcage. I'm guessing and hoping it's the "primary" kind which mainly affects young adults like myself, because it seems to be easier to get rid of fully. I have a meeting set up with the oncology depatment for Friday, and they are also going for some bone marrow and a few pints of blood in the beginning of next week to make sure it hasn't spread all over my body. So things are moving on..
The worst cough and bloody slime is also gone now, and I don't think I've been running fevers this week.. Got tired of measuring all the time! (and the pill-popping is also at a minimum) But so far it's been a good week and I'm happy things are going forward at TYKS. I'm also going to try and manage a wedding this weekend so that'll be a little test on my current physique. Might be the last party in a loong time if the docs slap me a strict non-alcohol regime when the treatments start! And the treatments might take up to a year so better make it count.. Just in case! =)
The worst cough and bloody slime is also gone now, and I don't think I've been running fevers this week.. Got tired of measuring all the time! (and the pill-popping is also at a minimum) But so far it's been a good week and I'm happy things are going forward at TYKS. I'm also going to try and manage a wedding this weekend so that'll be a little test on my current physique. Might be the last party in a loong time if the docs slap me a strict non-alcohol regime when the treatments start! And the treatments might take up to a year so better make it count.. Just in case! =)
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