A crazy week of appreciation

It's a year ago today that I was getting my lungs cut open by Dr. Bedard and his team who came in on their day off to figure out what's going down in my body. It's a year ago today I got my diagnosis. What a journey of growth (on many levels - ha ha) it has been this past year. Brian and I went out the other night (on the 6th - a year to the day of getting into emerg and being told I have a very nasty cancer in my lungs) to celebrate another year of life and getting to spend it with the people you love.

What have I learned in the last year?

Family is the MOST important thing in the world. The people you love and chose to spend the rest of your life with in front of all your friends. The people that have come to this world out of that love. The people who bore you out of their love. The people who you grew up with and fought with as a kid and discovered the world with as a sibling. The people who have accepted you into their lives because of the love you have for their son/brother. I love my family more than any words could ever express. Thank you so much for being my rock - all of you.

Friends are invaluable. People who you work with every day that take time out of their busy lives to show you love, support and give you courage. People you play with, and drink with and eat with and wouldn't think they would have the time to think about you, and they end up surprising you and filling your heart with joy and love.

Don't judge. You never know what the person you're choked with for taking their time crossing the road is going through at this moment. You don't know why that big person riding one of those little automated chairs is that big and in that chair. You don't know that the girl with the snarly face at the checkout is that way because the doctors have put her on some crazy meds. You just don't know. We all have our own crosses to bear and our own demons to fight. I have learned this last year to give people a break and be gentle with them (except when I'm having a pred rage moment - then I can't help myself, I try, but not always successful). What's on the outside is not always congruent with what's on the inside.

Take every moment of feeling good and being happy and cherish it because you never know what tomorrow holds. Treat it as the miracle it truly is. Live every moment like the next might be taken away (cuz it can be) with dignity, grace, loyalty, love and joy (I am not saying I've got this one nailed, but I try).

Don't stress out about tomorrow because I really have no clue what tomorrow holds. It's as much as a mystery as what lies on the other side of the universe, so I have stopped worrying about what can happen and if it will. There are billions of things that can happen tomorrow or next year, but I know what's happening NOW, so I will react accordingly.

Question authority. Not always but don't just take authority's word because they're in a position of authority. Those positions are held by people like you and me who have good days and bad days, who skipped some classes in school and don't know everything about everything. Inform yourself as much as you can and be an active participant in the big decisions that guide your life in a certain direction. Authority, for the most part, appreciate that.

There, I've  pontificated enough. Now to going out and enjoying my beautiful family. Happy Mother's day mommas. A big fat hug and kiss to my momma, thanks for being there for me during the super crazy times a year ago, there are some memories that are fuzzy, but one thing that is crystal clear is looking up between being in and out and always seeing your face looking down on me - full of love and compassion. I love you mommy.

Time's fun when you're having flies

Well it's almost a year from the real crazy times. It was a year ago today that I was in the Emergency Department of Hinton Hospital. Tomorrow would have been the drive to Edmonton to see the ENT for the last time before diagnosis, and three days from now was the night that I was told I have terminal-ish cancer of the lungs. Then things started to get better. These days were the real shitty ones.

Now - today - I feel good... real good (well ). Had the RTX just under a month ago, and what a difference. I just bought a treadmill and it came in last week. I've been walking on it to try and get some of the conditioning that I've lost over the last year. I look like a fertility doll - which I have never found pretty.

I've cut my hair short - up to the new growth - and all of my new hair is curly.... hmmmm, all of that money I spent as a teenager on perms, just popping some little pills for 10 months coulda accomplished the same effect. Ha!

The ski season is over, and it's time for new beginnings. Time to get the old Marta back on track. Time to publish a book. Time to plan a big event for next spring's Rare Disease Day (stay tuned).... also there might be some history making news from our Weggie Survey, who knows what tomorrow brings, I do know that today is a beautiful day with my beautiful people.

FDA OK's RTX for WG

Feel like you're watching an army flick with all those acronyms. Well that's what happens when you're immersed in the world of Wegener's Granulomatosis. You become acquainted with all sorts of goofy words you'd never have even considered looking up before...

The good news.... FDA has just aproved Rituximab (RTX) for the treatment of Wegener's Granulomatosis. This is great news as this powerful yet expensive drug has been one of only two 'big guns' used to get Wegener's under control when in a flare or at initial diagnosis. The other big gun is Cyclophosphamide / Cytoxin (CTX) which is a chemo drug that causes all sorts of other damage to the body. I've been on CTX for 10 months - EVERY DAY - and it sucks. It's kept me alive, but it still sucks. On that note, I finally decided to cut my hair. I lost, hmmm, I'd say about 70-75% of my hair but still had good distribution of the survivors and was holding on tight to the dream that it still looks OK. Meanwhile I was getting new growth underneath that was looking quite goofy. Soooo, I just cut all my hair to the length of the new growth and lo and behold, my new hair is CURLY.

So now I have a chunky pred face, neck, and back and short and curlies on top. Not a pretty picture to imagine, but ironically I feel much more human since the hair purging. Brian is still trying to get used to it, but all in good time.

I think I dodged the bullet

I think I might have had a little pred rant last time.

Hana ended up going through the cold/flu thing while she's with her grandparents and I think I might have dodged it. Pheeee-uuuf.

I'm noticing a considerable improvement in my sinuses in that I don't have to wake up 15 times a night to blow my nose and unstuff my breathing passages. Yeah! Headaches are also subsiding. I get the occasional 'zap' but I know how to deal with those now. There is no pressure or pain behind my eyes. My skin is not doing the 'Johny technicolor' show it use to, and my face feels floppier when I touch it - it doesn't feel like an overinflated balloon that might pop at any moment. On that note, love your wrinkles.... you have no idea how great they are until you loose them... I'm so looking forward to having my old wrinkles back. My hair is a circus show, but I am starting to get some new undergrowth (about an inch and a half) and my fifteen strands of long hair fighting for supremacy are keeping the peach fuzz underfoot slightly in control.

Now to the job of getting strong again. I have lost pretty much all of my conditioning (other than the basic minimal requirement to stay upright) so it's time to get it back.

Old Marta, here I come.

RTX ROX

So it's been just over a month since my first Rituximab infusion and things are looking brighter. I had a bit of a dip but it seems to be clearing itself up. One little downside is that after just one day back at Nursery School, Hana got some bug and now I think I might have gotten it from  her as well. That kinda bugs me. I know that those environments are little petry dishes, but it's so blatantly obvious that it makes me a little angry. I had been keeping her from school the week before the second infusion as I couldn't get anything or the whole thing would be a waste, a $10,000 waste as well as my chance at getting healthier. Then there were two weeks of holidays for Spring Break. We've managed to stay healthy for a long time while the world around is sniffling... then off she goes to school on Monday and is sick by Wednesday. I just started coughing this morning but I believe now that I have no B cells, my immune response is slower. Hopefully this blows over soon and healing continues.

Woo hoo Rituximab!

The Valley I didn't think about

I am now in a valley... which is normally a good thing when you're out on a back country hike, but in this situation it's a little unnerving. I didn't think about this before the infusion and am getting a good taste of reality, but I also know that this is the final umpapa before things start improving.

What's my valley? Well, cyclophosphamide stops working about a week after you stop taking it. I think it stays in your system a little longer, but I definitely know from experience that there is a week on either side of starting or stopping cyclo where you feel a definite difference in symptoms.

I just saw my doc on Friday and asked how long before the Rituximab kicks in and she said four to six weeks and for some people two to three months (I wont be one of those however). Sooooo, there is a few week period where symptoms will probably come back - I'm starting to feel the headaches and the shooters making an entrance.

I also asked about why some people are getting an RTX infusion every six to eight months and if I had misunderstood our goal. She reassured me that I had not misunderstood and in my case we will not re-infuse unless I have another flare. I am not interested in needlessly taking drugs and being B-cell depleted for the rest of my life. What I am looking for is a normal life with a drug free remission as the pillar holding that together - for a looong time.

I thought of something the other night. I have always been a strong believer that change is great. I have always loved change. I wonder if I got an 'in your face' from the universe.... but I still have to say that I love change. It keeps things fresh, even if it is with a stinky disease like Wegener's. There are so many people I would never have met and things I would not have done had I not been introduced to Wegeners's. So in YOUR face, 'in your face'.

Biological Weapon of Mass Destruction

Wa - ha ha ha ha..... I have set off a serious BWMD on some poor, unsuspecting, misguided B-lymphocytes. There will be another attack in 18 days to kill off the ones we missed and then a new/old life hopefully.

The event was quite uneventful - thank goodness. The nurses were awesome. There are a lot of people who are in there too often. It was quite the infusion dance hall. I got to see lots of people coming in and leaving as my infusion is one of the longer ones. I was there from 8:20am to 3:20pm. One dude came in (a regular) and slept for about 6 hours while getting his infusion. Apparently he works nights and schedules his infusions in the middle of his workweek so that he can get a good sleep before hand. They give him some Benydryl and off he goes to slumberland. It was an interesting vibe - way different from the ER vibe where everyone around is in a slight panic and unsure of the events to come. Here it was all relaxed and everyone that came in was at peace with their lot and what has to be done. The lady beside me said to me... regardless of the poking and prodding, it sure is worth it in the long run. The nurses are happy, relaxed, peaceful, as are the patients.

I felt a little tired after the event last night, and a little off today (tired wise) but other than that nothing out of the ordinary. I've been having dreams of running races, and through the forest, and doing all sorts of things from my old life that I haven't done in a very long time... so hopefully, like little Hana says, "your night dreams will come true".