Reality Chick

This title was a bit of a typo but I left it, you'll see why in a minute.

I've been cooresponding with the friend of a friend that has just been diagnosed with Myleo Fibrosis (MF).

Warning health Science content to follow: For those that want, you can just snooze for a paragraph.

Remember that MF is the scarring over of the bone marrow and I had it before I had the Bone Marrow Transplant (BMT).  My MF came on the heels of lots of warning and after I knew that I had some blood disorder. 

Anyway it's come suddenly for her and she, rightly so, has lots and lots of questions and is concerned. In giving her answers from my life and situation I started on about being positive and wrote a lot about it lately and thought maybe I was just so full of myself that what I was saying was not true and may even not be what I was doing myself so I thought I would vet it through you my faithful network of supporters. 

If its sounds like crap let me know.

I'm good I have no symptoms that I can see or feel except swollen ankles. Joyce and I are taking a break on the sunny coast at Maroochydore for a week. I've had tons of time to rest and recuperate but Joyce has been my carer and the bread winner for 11 months now and she's just tried. I have more to say about her further down in relation too your support.

It may very well just be that your body needs time to settle down. Remember that it took a while for you to get to this state. Even though you just found out about it your blood has been changing for months and maybe even years. I've had fibrous matter in my bone marrow for years and years. you can't expect to resolve it in a week. Remember that your body has some pretty amazing restorative powers. You need to give yourself permission to fall apart a bit. It's like you are grieving for the loss of your good health, you are not going crazy just dealing with some really shitty stuff and if anyone gets in your face about being brave and bucking up just tell them to fuck off for a bit!

You are doing the right stuff. Of course you are thinking about your future but keep in mind that you don't yet have all the information you will get. Don't be thinking that it's going to be this way for ever. YOU DON'T KNOW THAT. You need to be thinking about how your kids will want you to help them but you also need to find the strength to talk to them openly and get them on board to support you. You don't need to scare them but kids can be resilient too you know.

I totally understand how you are feeling. I had pretty much set my affairs in order at one time thinking that I might not make it through the BMT but I guess I just got calm and some acceptance came over me. But I always believed that my body could beat this, That I could be in the top percentile. And I guess this is where the positive comes in I decided that I was going to be the cool positive person and not the negative lay down and take it guy. It really helped that Bluey was so positive as well. She keep me grounded if I drifted too much.

Quick story: In the hospital the nurses are real careful to not get attached and they move around between patients a lot. You get the feeling that you are being nursed by an army and that in itself, helps a bit. One nurse that I had for many nights was having a bad shift and was in a dark mood when I happened to be having a bad time. She pretty much told me to get over myself and quit giving her a shitty time! I really thanked her later because she reminded me that it is not always about me.

I'm generally a positive guy and have been that way all my life. But I did some things to my thinking coming into the BMT and the two surgeries prior.
I'm a serious believer in behavior modification. You know.... that you CAN change your outlook and thinking by changing your behavior. This led to me developing several 'power of positive thinking' (POPT) ideas.
1. I started wearing Mambo and other Larry shirts and telling people that I was being bright on the outside so I would be bright on the inside. It turned out that it was fun to this as people laughed at my wild shirts. Joyce got going buying vintage shirts on ebay. The nurses watched to see what shirt I would wear.  I talked about the "power of Positive couture". It became a focus of positiveness and no one talked about my stupid bone marrow.
2. I took pictures of all my family and friends and stuck them up on the walls and I spent a lot of time getting ready by scanning and printing out A4 size pictures. It kept me from focusing too much on the negative and reminded me about why It would be a good idea to stick around. to be with all these nice folk.
3. I wrote my blog because after all it IS all about me ;-0 I was spending way too much time talking about me so I made people read about it and discovered that I like to write! and that I got some real nice feedback about my writing and that I was so collected and calm. That really wasn't that true but I started to believe my own hype and it made me feel great!
4. You will need the support of your family and friends but you have got to know that people in your life won't know what to do with you! Some will not be there because they are too frightened of their own mortality. And you will get the other end where some friends  will surge to the front and be so amazingly supportive that you will be overwhelmed with gratitude. The POINT is that you need to help people to figure this out. You need to direct how they should BE around you. The side benefits are that you come off being a great soul, they are put at ease and able to support you and the whole time you are taking your mind off your issues. This particular insight comes from Joyce.... did I mention that she is really smart. She is also a serious worry wart and some of my positiveness was that I was just trying to keep her buoyed up. But here is a really important note. You have to let people in! You cannot protect them from your issues and/or your pain and fear. If you stay closed to them you just magnify it for everyone. If you let them in you spend all your time thinking about them and not about yourself and that's good. I was worried that you were doing that a bit. You do need help but you have to help them ...to help you.
5. You have a great husband and kids, I suspect, but you are the only one inside that head of yours, baby, so it's up to you to get a grip!
6. If in doubt just fake it! If you pretend to be 'okay' and you act calm then eventually you will be calm and okay.
7. Don't worry it any of the above don't work, or stop working because you can try another angle and over time they may work again.
8. Don't worry if for a period of time nothing works and you just need to wail. This too will pass (you will have to take a breath sometime and drink some water to re-hydrate) and one of the above will start working again.
9. If any of the above seems like a crock of S**T then it probably is but it worked for me, so maybe it isn't.
10. Make a list like this ....you spend so much time thinking of things to write behind a number you forget what you are worried about anyway.

Remember that is a whole family thing and you need to get help to keep your head because your brain is one of the biggest tools you have to fight this with.

So does the above sound like the authentic me or is it just claptrap that made up today to hear myself talk?

Does anybody have any further illumination for my pal? If you don't want to go to the trouble of signing up to respond just email me and I'll post it for you. chrisolin22@hotmail.com

more later

Chris

It's got to go!

Last time Doc Schoozenbootz saw me he hadn't seen me for 7 weeks prior.  He was astounded by my hair growth and then told me I should shave it off! Not so weird, really, as he is tight with the folks at the Leukemia foundation and knows that their 'shave for a cure' campaign is around the aniversary date of my transplant.

 In fact my 'shave' date is March 16th,2008!  My anniversary of getting my new cells, actually Rick's old ones, he had some to spare! So I am fundraising for them, starting........NOW.

So if you would like to sponsor me and give a bit back to the folks that helped me and continue to help many others that have much greater fights then I, please donate by seeing me in person, or online at my shave webpage. It is tax deductible here in Oz and since there is a tax pact between Canada and Australia I believe it is tax deducible there as well.  If you prefer my Canadian pals please make a donation to your local Leukemia Association, and send me a notice so I can add it to my total here. I'm shooting really really high. since I now have expectation of reaching my next birthday I'm raising $100.00 for each of those years. I reckon that's reasonable. So I'm looking at $5600.00 as a total! I hope that you can help me as approximately 9,000 people are diagnosed with leukaemias, lymphomas and myeloma each year; the equivalent of 25 people per day. Leukaemia is the number one childhood cancer in Australia but predominantly develops in young adults and older people in the community. The Foundation supports patients and their families so they can concentrate on what’s most important - getting well.  

Thanks for your attention

more later

Chris

Crowed House were Awesome!

Hands up who can guess where Bluey and I were last night? Okay perhaps this is a quiz that is too easy but the reformed band that played last night to 11,000 in Brisbane was just amazing. The sound was crisp and clear and the band was just on fire. They had tons of energy and did a lot of the older material interspersed with songs from the new album. go to Crowded house website to see what we mean in a small way. Or go to the show on one of the other Australia tour dates! They played in Calgary in Sept. did anyone get to see them there?

Anyway enough about them.... I've been playing with facebook a bit lately and am pretty blown away with the fact that I can look at friends of friends and see who's who. I have been adding friends at a fast rate and am connecting up with friends in Canada that I haven't seen for over 11 years. It's quite nice really but many of them have not caught up with "what's up Chris" before so they may be a bit surprised. Welcome anyway.

I've been watching Lisa Mckay to get ready for her auditions at various universities for their Musical Theatre programs. I drove her up to one in Bundy that I thought she did really well at.... based on the fact that I heard her through the walls and did not hear either of the two others in front of her! I heard her dance audition piece... the one that another friend of hers edited on their computer. I immediately offered to redo the edits as they had missed the beats a bit. This is the kind of thing I was doing back at Uni in the 70's and it was very interesting to be able to do it again using digital techniques instead of the pieces of 1/4 inch reel to reel tape splicing I was doing then. I haven't heard how she likes it yet as I finished it just before we went to Brisbane. But at least it's on the beat now. Did you know I took two years of dance at Uni? As a budding lighting designer I wanted to understand more about Dance. I got teased a bit by my buddies until I pointed out that there were three guys and 20 women in my class! Two really good years! Anyway as the token techie in class I was in high demand to do editing for all my classmates short pieces. I remember one girl wanted a 5 minute piece of music cut into about 12 parts and stitched back together completely differently. I really learned about editing music that day. Hey I can let you hear the piece on this blog...just a minute. Nope I still need to figure how to do this.

I love that my life included digital editing for dancers and now includes helpingClydesdale foals get up for that first suckle.

more later
Chris

Day 231 review

Hi there!
I saw Doc Schoozenbootz last Friday which was in fact day 231 so today its day 234.

He looked at my liver levels over some time and showed us that they had spiked up suddenly about 2 months ago and have been dropping back towards normal since then, when he prescribed a slightly higher dose of the immune suppression drug. That confirmed for him that I do/did have GVHD in my liver. We then talked about how long I will be on the drug and he related the patient history of another fellow that has been on it for 2.5 years, and he had a little GVHD in his liver too.

So we asked about how I manage all this and got some surprising answers. For instance I have been getting antibodies for various diseases commonly inoculated against as part of the intra-gam I get monthly. So my recent accident with barb wire was not such a worry.
-------For me but for Joyce it is still a worry!
I will be able to get a tetanus shot anytime. My immune system is low but not knocked out and I will probably be able to go back to work at the end of January when the new school year starts.

So its a bit of a mixed bag. I have GVHD and the protocol says I'm on the drug for 3 months after that so its on for a while, but even while I'm on it.... and I quote the doc "you can't wrap me in cotton wool." That's a bit of relief for me as I was champing at the bit to work aroung here. Joyce is worried that I'm going to go nuts and get hurt or wear my self out. Time will tell but I will try to keep control so that I don't get an infection.

I'm still only having one drink at a sitting and only occasionally, I still don't eat leftovers, we watch where we eat out, I eat only fully cooked from fresh when I'm out. I don't eat shell fish, prepared meats, or from buffets (from bain maries) WE are on a modified liver cleansing diet. lots of water, fresh juice every morning and very little red meat. Reduced fats and no saturated fats if I can help it. I'm trying to cook more fish but one of us, and I'm not mentioning her name, is not a big fish fan except for Salmon but that can get boring. Those of you still living on the Prairies will know that a good feed of Salmon is not be scoffed at but 2 or three times a week is a bit much and there are so many great reef fish here..... I'm working on good ways to prepare other kinds of fish to make it more accepted but it's early days. Some of you may have had the pleasure of my cooking and some of you may have been present for some of my greatest disasters in culinary experimentation. You will appreciate what said woman is going through while I find her alternative fish experiences.
------- This would be the point where you all chime with posts relating some of my greatest disasters.

Anyway other then that we are good.

More later
Chris

I feel good and strong so its just to get my test levels up. next doc appt Nov 30.