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.

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..!!

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! =)

Still nothing..

So this week was fun! Since Sunday I've had a slight fever almost every evening (execpt once I had 35,8C which is weird) and the cold sweat keeps my pillow nice and moist all night, every night.. I'm also spitting out a bit of bloody slime from time to time and I still have some pain in the middle of my chest from the biopsy. The only thing that's getting better are the 3 holes between my ribs, they are pretty much closed up now. I was seriously thinking about almost considering dragging my behind to the doctors office again, but I decided I'll manage the weekend.. Getting sick of antibiotics!

I also called my surgeon today and found out.... nothing! Next chance for relevant information is Tuesday, so I got another 4 fun-filled days to look forward to. Guess I'm gonna team up with all the meds I have and host a 48h slumber-party this weekend! At least Team Finland is showing their claws this year (Icehockey you know..) so that's one big positive to look forward to! =)

I'm actually making a Blog?? (Start here!)

Yeah, so I kinda promised myself that I will NEVER start blogging because every idiot out there does it and most of the blogs are pretty much pure crap. Well, I'm not gonna make a fashionblog or foodblog or travelblog or interior-designblog or some other boring blog about my stupid life or hobbies! In fact I'm not even going to call this a "Blog" because I hate the word and concept itself.. (issues much?)

So let me put this blog-hate behind me and explain what I want to do here.. I'm thinking this would be a cross-mix of an informational text for people I care about and a personal outlet to help me deal with what I'm going through with my current illness. I was thinking of making a journal (old school, like in a book), but that would be near impossible to share with a large number of people, so I guess this the practical way to go. (But I'm still not calling it a friggin' Blog) The plan is to make a chronological collection of inputs of how my illness came to be and how I felt at each stage of every diagnosis and by doing this I have something to look back on when (not IF) I beat this. And maybe even help someone else cope who suffers the same fate as I have. I also hope that by writing about my symptoms in detail I can educate others to recognize the early symptoms of this horrible disease.

So..
 
This is the story of how I got Lymphatic Cancer and my road to recovery.

(I choose to do this in english even though swedish would be more convenient as it is my mother tongue, but as I know a lot of people who do not speak swedish, I think this is the best way to go. I'll try to keep it simple for my own sake and also for you guys who care enough to actually read all this. =) )

1st input, testing..

Testing testing..

Edit: Yeah, just checking how this thing works to get started! For some reason I feel like keeping this input.. =)

Home sweet home!

After having all the tubes and needles removed on Friday (11/5) morning I started moving around a little bit and felt quite ok. The horrible part was when they pulled out the drain tube! It was like 30cm inside me! YUK!! I got to eat breakfast and go to the toilet and everything! (feels great after being in bed for 24h) I also had visitors dropping in and bringing me goodies all day so I really felt good enough to go home the next day. Also got a lot of information from the doctors in the morning and they gave me a really positive prognosis. So things were looking up! (Considering..)

By 10:30 the nurse had all my papers ready and I started to pack my things. Heidi came a few minutes after 11 and it was bye bye TYKS.. For now! We spent a relaxing night at home since Heidi had cancelled her b-day party because of everything and we went to bed early. Sunday was mothers day so we went to visit my parents and even Heidis parents made the trip from Ekenäs. Sunday night I had a slight fever (37,3C) but no big changes in my condition. I just wish they had stiched up the drain-hole in my side. Now I have to change band-aids (or adhesive bandage) a lot since it's still leaking stuff. I had another slight fever (37,2C) yesterday (15/5) and the cough gets worse at night, but the Ketorin 100mg and Codesan is quite effective at handling that. But I'd guess I'm running another infection.. Again!

So, now all I can do is wait for Friday to get more news on what kind of lymphoma I have. They should have the answer by then but you never know. There are over 70 different kinds so I'm hoping for one of the "easy ones" to beat. They usually are at my age! Until then..


This brings my journal up to date and I'll try to write as things keep happening from now on. Time to start spreading it around I guess! =)

Happy Birthday Heidi, your man has cancer!

While riding in my bed to the operation room all kinds of panic went thorugh my mind. (I was also enjoying the ride for some reason, exiting!) You just can't help thinking that once you go to sleep, you might never wake up. The procedure is done by humans, and there are no perfect individuals among it's species. Once we got there I had to get up and move over to the operating table. Man this room looked like a space station! In no time at all they had pierced me all over with different cannulae and kept slapping EKG-stickers ALL over my body. Then I was offered THE gasmask. All I had time to say was "good luck" and -boom- I was out cold! During this time untold horrors were done to me and I sincerely hope all eveidence of this unnatural act will stay hidden forever.

The first memory I had was at approximately 12:30 (give or take a whole lot of minutes). Someone was poking me and asked me how I was doing and if I was in pain. My head was clear enough at that point to manage the question: "did you take the whole thing out". When I got a disappointing "no" to my question I quickly needed more drugs and in a jiff I was back to sleep. The next memory I have was about one hour later as they once again offered me more drugs, and of course I happily accepted. The next hour was a series of falling asleep and waking up and getting drugs until finally 14:30-ish they rolled me back into my room. The elderly gentleman who was occupying the bed next to mine had surgery right after me and came into the "wake-up room" right before I was rolled away. He was screaming and howling and kicking around like crazy calling for his mother repeatedly, I guess they overdosed him a bit with the drugs. (Later he told me he was totally "euphoric" while in there, I chose not to tell him he was screaming for his life..)


When I was back in my room I still had two cannulae attached and long tube sticking out of my side. The tube was apparently a drain to remove excess blood and pus and as long as my lungs weren't leaking air (which would have made the drain bubble) they promised to remove it the next morning. In my right arm I had the second bag of IV-fluid going. The second canula could now be removed and since it was right in my radial artery they had to put a pressure bandage on it. When looking around I had at least 8 needle holes in me, three big holes between my ribs (two of them stiched up) and my face and chest was covered in yellow stuff. (Probably Betadine?) But the important thing was I couldn't feel any of it! Drugs ahoy! =)


At this moment I can't remember when they told me about the cancer but at some point someone told me it's most likely lymphatic cancer, not lung cancer. While it was a relief I didn't have lung cancer, which is usually fatal, I wasn't too happy to know I still had cancer. For some reason I didn't react that badly to the news since I was kinda expecting the worst.. Still a bummer though. But at the same time I was told (I'm pretty sure the nurses kept me informed) that lymphoma is highly treatable by chemotherapy and needed no further surgery. So it was a lose-win situation. I took it quite well.

After 15:00 the relatives started dropping in, my dad and sisters all came at once and I got to deliver the news right away. They also kept calm. They brought me a pile of magazines to read but I couldn't move around enough for that yet. The worst part was when Heidi arrived and was not expecting any news at all, only to find out how the surgery went and I how I felt.. It's was sort of like: "Happy birthday honey, I have cancer". She did not take it well.. Worst b-day ever? That also made me feel a bit worse than I was earlier. =(


Anyway, the family left after a while and Heidi stayed for a few hours. I got a drug refill (shot) right as Heidi arrived so I was a bit groggy most of the visit. I guess we were discussing the upcoming wedding and if we would be able to have it and so on.. I don't remeber much of that evening. The surgeon was scheduled to visit the next morning to give me more information about the operation and lymphoma. After a total of 4 bags of IV-fluids they closed he canula for the night and I also started drinking fluids orally. Because of the drain tube and oxygen-flow-tube in my nose I was still hooked up to wall with two devices so I had to pee in a bottle. The rest of the evening I was watching icehockey and sleeping. This time sleeping wasn't too hard, got some additional pills before lights-out. ZZZzzzZZZ

So I have a tumor, what's next?

After a long weekend of soul searching and meeting with my parents and such I was very much ready for the phonecall on Monday! Naturally they kept me waiting until about 15:30 but at least they called as promised. He told me that surgey was imminent and if I wanted more information or to speed things along I could call the Thorax-Surgery department myself the next day. Luckily they also thought time was of the essence so I got the call myself in the morning even before I had woken up. They told me to check in at TYKS A-building, department 211 at 14:00 on Wednesday (9/5) and that I had to spend the night even if the surgery wasn't until Thrusday morning. I got permission to bring my laptop and pretty much anything I wanted so sleeping there shouldn't be a problem.. 

During Wednesday they took two different blood samples at two separate occasions (one for blood type, the other for compatibility), I also got an EKG and they measured my blood pressure. Then I got to meet the surgeon and his staff and recieved some detailed instructions on post-surgery rehabilitation from a nurse from the physical therapy department. Those included breathing excercises and such because they were going inside the ribcage which could cause lung complications. The main plan was getting inside the ribcage to take a look at the tumor and if possible even remove it, but at least get a biopsy for futher identification. This required at least 3 small holes in my left side, or if needed a larger incision below the ribcage.

Sleeping there was horrible. The bed was uncomfortable, way too narrow and the pillows were flat and lumpy and inside a plastic bag. I did sleep a few scattered hours but they came in already at 5:00 and gave me a Diapam to keep me relaxed while waiting for 8:00 which was go-time! No breakfast or even drink was allowed because most people get sick when the anasthetics wear off. I think I fell alsleep as soon as the Diapam kicked in and woke up as they rolled me away to the OR. (Yeah, I said it, OR!! And I hate hospital TV-series!)

Worst news in my life.. So far!

After a fun and exhausting Wappen it was time to finally find out what the heck was wrong with me. During the waiting period my father had recieved the final diagnosis for Alpha 1-antitrypsin deficiency or A1AD, (he was also experiencing wheezing and coughing while sleeping) and I was pretty much 100% sure this was my problem as well. All the symptoms were there and it's very likely to be passed on to the next generation. These are some of the symptoms descibed in wiki: "Symptoms of alpha-1 antitrypsin deficiency include shortness of breath, wheezing, rhonchi, and rales. The patient's symptoms may resemble recurrent respiratory infections or asthma that does not respond to treatment. Individuals with A1AD may develop emphysema during their thirties or forties even without a history of significant smoking, though smoking greatly increases the risk for emphysema."

A1AD is totally treatable and the genetic mutation my father had was of the lowest degree so I was almost hoping this would be my diagnosis as well so I could start getting better! Well I wish.. The CT-scan showed a huge tumor (9-20cm in diameter) on top of my left lung (going over on the right one a little bit as well) and since that was the last thing I ever expected it hit me hard, really hard. Took me a while to realize that the doctor was actually talking about a TUMOR on my lung, but when it finally sunk in my life just stopped. I asked the doc some questions and he tried to calm me down by saying it's probably benign but all the horrors of cancer and death came flooding in my head at once and it almost crippled me. I managed to ask when I'll get more answers and he told me he would call me on Monday afternoon and that he would consult some cancer specialsts and put together a meeting (Monday) to determine my future care. The good news in all this was that the lung biopsy came back clear and the NSE value was only 24 when 18 is normal.

I somehow managed to walk to my car but with every step the fear became worse and by the time I got the car I was totally overwhelmed with sorrow and fear of my life. For the first time in my life I was faced with the possibility I might die soon. I think I sat in my car just crying and staring at nothingness for over 30min trying to gather myself to call Heidi and my parents with the grave news. Since Heidi was at work I thought it would be better to send her a message in case it would be a bad time for her to pick up the phone. After doing that I had calmed down enough to try and call my dad without losing my composure on the phone. That didn't work so well, all I could muster up was something like "it's a tumor, I have a lung tumor".. That was an exhausting phone call. After a lengthy conversation with my dad I was calm enough to call Heidi who kept trying to call me a few times while I was talking to dad. That went a bit better but all sorts of feelings was stirring up with every minute passing so after the conversation with Heidi was over I didn't drive away for another few minutes. The rest of the day was pretty much a blur.. 

I did write my sisters with the bad news and some close friends as well but at this point I didn't want that many people to know.. It was bad enough I had myself guessing what it could be.. I think I narrowed it down to a likely adenocarcinoma if it didn't turn out to be benign.. But I tried to stay positive. I had the longest weekend in my life in front of me..

Diagnosis: D38 Turmor Thoracis