Sunday, November 14, 2010

Bad Times are gone!

We have employment! An update on the major changes in our lives to come soon!

Bad times here at the Fairfax household. As of Thursday, Matt unexpectedly lost his job when his company shuttered their doors. They were the whole reason behind our move to Vegas last December, and now we have nothing coming in beyond my disability.

He's madly looking for another job... that may leave us here, take us back to Oregon, or anywhere between the Bay Area, to the Carolinas... but we have to find something.

I am of course, freaking out about medical costs, what to do about insurance, and all of that. Will be putting a call into the social worker here, and probably at my old clinic in Portland to see what my options are. Going on Medicare is an option, as well as Cobra, but we have no idea how much these two things will cost us. I have an okay stockpile on medications, though some I have virtually none.

I don't know where our lives are going to go. And that is terrifying. Though I really hate asking for help, I will include a link to my paypal. Even a few bucks will help us out right now, until we get our feet under us again. I've been in the position so long to be able to help, and have. It's strange and scary to be on the other side.

Tuesday, November 2, 2010

Dear Eva

Dear Eva,

7 months since you left this world. Tonight another cystic friend left this world. Invite Gess to the party... he may be shy at first, but if anyone can pull someone out of their shell, it's you.

For Good is on right now, playing on my iTunes shuffle. I don't know how well I'm doing, living the life lessons you taught me. Right now, my life is going so many directions, yet at the same time I feel stuck in the doldrums of being sick. but I'm starting on the next big step. My first meeting with the transplant team at UCLA happened on October 14th, nearly a year to the day after I last hugged you. I know you and Jenn were there with me... my CF cysters who hold me when I'm scared.

The transplant team thinks that I'm still too healthy, which I agree with, but they're going to keep a close eye on me... for which I'm grateful for. I am so scared of getting too sick, waiting too long, or suddenly being gone like Jenn. I'm scared for my family, for Matt, for my friends... I need to make it through this, I need to breathe again.

I miss you girl, each and every day. Squish Jenn for me, have a dance party, and welcome Gess. I'll talk to you again soon.


Tuesday, September 14, 2010

Slipped Stitch Stripey Hat


I made this lovely hat with yarn that was graciously given to me by the lovely people at Crystal Palace yarns. I love the mochi line, with its rich colors, and amazing softness. This hat has an option to fold the brim up to have a short hat, or bring the brim down to cover the ears.


Materials - 2 balls of Chunky Mochi
Size 10 Needles

Abbreviations -
k - knit
p - purl
s|1 - Slip one stitch
k2tog - knit two together

Procedure -

Brim - Cast on 64 stitches using the long tail method. Join to work in the round. *K1,P3* until brim measures 2 inches. On the following round, knit all stitches. Then purl all stitches for a round. This creates a nice line for folding, and a break in the visual line between the brim and the body of the hat.

Body - Round 1 - *k3,s|1*
Round 2 - *k*

Repeat these two rounds until hat measures approximately 4-5 inches from brim.

Decrease Rounds - Round 1 - *k1,k2tog,s|1,k3,s|1* (56 stitches on the needles)
Round 2 - *k*
Round 3 - *k2,s|1,k1,k2tog,s|1* (48 stitches on the needles)
Round 4 - *k*
Round 5 - *k2tog,s|1,k2,s|1* (40 stitches)
Round 6 - *k*
Round 7 - *k1,s|1,k2tog,s|1* (32 stitches)
Round 8 - *k*
Round 9 - *k2tog,k2* (24 stitches)
Round 10 - *k*
Round 11 - *k2,k2tog* (16 stitches)
Round 12 - *k*
Round 13 - *k2tog* (8 stitches)
Round 14 - *k*

Kitchner stitch the remaining 8 stitches together. Weave in ends.

Thursday, July 1, 2010

Today's Clinic...

Didn't go so great. Despite being up 10 lbs, which should be cause for celebration, my PFTs were down 5%. Under 30%. They wanted to admit me, start me on IVs, but I have to hold off. We have plans, and as I don't feel bad, I am going to go home to Oregon, then to South Carolina to see Matt's family, then I will go into the hospital. I know some people out there in cyberland think that I'm probably crazy for doing that, and that I'm not putting my health first. Maybe. But maybe not. Because I know my emotional and mental health would take a HUGE hit not going home in 8 days... it's my birthday weekend and I want to be home. And we haven't been to South Carolina in a year and a half, and I'm desperate to see that side of my family. Plus, I don't feel bad. Other than shortness of breath, I am trucking along just fine. So my doctor reluctantly handed me oral antibiotics and some prednisone. When I get back at the end of July, I'll go in for those IV's, as well as starting testing for a lung transplant evaluation.

Friday, June 25, 2010


I hate CF.

When I can't breathe.

When friends die.

When the bills are too much to pay.

But nothing is greater than the rage, sadness, and desperation for refuge that I feel when a young child dies of this beast.

Conner, you fought so hard. Peace and love to your family, as you finally run and play without gasping for breath

Friday, May 21, 2010

27, planning 30

I'm already planning my 30th birthday. It doesn't matter that I'm yet to turn 29, or even 28 for that matter, I'm already thinking about what I want to do for my 30th. I don't think there is anyone else in this world that anticipates 30 quite like a cystic born in my generation.

When we were born, 18 was about the best that anyone could ask for. Parents were told to take their kids home and enjoy them while they still had them. Growing up was a dream. Our childhood was a period of great discovery in the CF world, from finding the gene, developing new medication, and discovering better therapy protocols. By the time we were teenagers, the life expectancy had grown to 30. Where it sat. And sat. And sat. It's slowly crept up since then, but for a long time 30 was the magic number.

And now 30 is slowly coming into sight. I know that it's still a long time off though, when you only have 30% lung capacity. It's a very real possibility that between here and there, I may have a lung transplant. It's a very real possibility that I stay the same or very slowly decline. It's also a very real possibility that I won't see 30 at all.

I'm pretty sure I'll make it to 28. Shoot, the groceries I'm buying lately have my birthday as their use by date. If they can make it to July 12th, then so can I. And 28 is awesome... but it's no 30.

Do I have a huge party? Would anyone come? (wait Talana, the "I'm insecure and nobody loves me" post is for another time) Maybe a cruise? I'd want some people that I love to come with me like my parents and my sister.

Tuesday, May 4, 2010

Holding Fast to Quicksand

This weekend was a study in all the parallels of the CF world. Of all the intrinsic parts of holding on to fleeting moments.

I traveled to Boston this weekend for Paul's memorial service. Though he passed away last year, the service wasn't until this weekend. It gave the perfect opportunity for a large portion of Q's online community to plan their travel from all corners of the US. North Carolina, California, Washington, Indiana... cystics climbed in their cars, boarded planes, and traveled to gather to honor one of their own. We're not supposed to. We're not supposed to ever meet. But we do. Germs be damned, a gathering of those that understand at a level that could never be understood by a non-mutant, a genotypical, is something to behold. I'll post pictures later, but seeing so many strong, wonderful, beautiful people that all share the same monster is amazing. People that despite having a lung transplant mere weeks ago, or lugging a portable oxygen concentrator, or hooking up an IV during lunch, are able to laugh, smile, and be so happy to be a part of the coughing chorus.

But even as we stood there, baking in the unusually warm Boston spring day, friends were dying of the same monster. We lost several in the CF community this weekend. Some of those that were healthy, living, so alive, only weeks ago. Infections that were so fierce that they couldn't be defeated. I don't remember a time before that so many people went from moderate health to dead in only a few weeks. It's scary, because I know it could be me next... or any of my friends.

Some wonder, why would you subject yourself to knowing so many people with CF. The emotional pain that must come from it must be extreme. The dangers of meeting them in person, the possible transfer of bugs, how could you possibly risk that? I wonder how I could possibly not. I would not be the same strong, resolute, and emotionally stable person without these friends. Without these people that get me. And while the online world is amazing, knowing them in person, hearing them cough just like me, seeing them pop their pills, and rest at the bottom, middle, top, and 15 more times in between while climbing a hill, words can't express what that does for my mental health. What that does to make me feel less alone. More connected. More reasons to do my treatments, to fight, and to walk down that transplant path which is rapidly approaching. Giving me strength to start the evaluation process in the near future. I couldn't do it alone. And while my genotypical support group is also VERY important, I couldn't do it with out my nebutants.

Tuesday, April 13, 2010

Knitting :)

When you sit at home all day, unable to work, and your only vehicle with your husband at work, you have a little time on your hands.

So you knit :)



Also through knitting groups, I've found fantastic friends here in Vegas... which is so helpful to my mental health. Moving from the area where you've lived your entire life, where you can the into the grocery store and see your cousin, or wave a pedestrian across the street and notice it's a kid you used to babysit, or even somewhere that your Dad's boss is a kid you graduated with. Vegas, I seriously knew no one... so meeting these wonderful women, who also share a fiber obsession has been a huge help!

Saturday, April 3, 2010


It's taken me a few days to be able to even write anything. To even process.

The weight of you being gone, it just sucked the air out of me.

A glance at my piano. The piano that I played the sheet music on that you bought me while you sang, when those lungs were giving you the life that you always dreamed of.

The pile of red yarn sitting next to my bed, destined to be designed into a shawl to remember you, tiny beads of rouge and silver, glass roses, red of course, to play along the edges.

The lessons you taught me, the ones that you said that I taught you, even though I can't hardly imagine that I could have anything to offer you. I always was amazed that you picked me, chose me, in all my broken and selfish and me ways, that you picked little ol' me to be part of that special group. It's strange looking up to someone who is younger than you, though that looking up was always literal, you made me feel like I should launch into a rousing rendition of "Lolly Pop Guild".

I may appear to a lot of people to be fairly fearless. You saw right through that. Saw all the walls that I put up around my insecurities. That I don't live in fear, but I don't live vibrantly, because if I don't, then I don't have much to be scared of. You're one of the few people that ever saw it, that ever had the words to tell me to buck up. You told me, as my health began to slip, to never be afraid of living. To not give in to the fact that I was sick and to crawl into a hole. That I still needed to live, vibrantly. Lord knows that I try. It's scary. Unbelievably so. You had a way of pushing me, to say what I was scared to say, because I didn't want people to know what I really felt. I don't know how, but you were able to do that. And I know I pushed you sometimes. When I saw a bit of me reflected in you.

Though I don't talk a lot about my faith on here, it's a theme in my life. One that you latched on to. You told me that I helped you find God. It gives me a lot of comfort right now. I rarely proclaim my Christianity, because I'm often judged to be a poor Christian, because I don't go to church, I'm a proud liberal, who is pro choice, pro same sex marriage, and I cuss like a sailor. I'm not perfect. But I do believe in God, and I do believe in Heaven, and I've had experiences that make my faith rock solid. That this girl, who has been told by a few too many Christians that her faith is not worthy because of her beliefs, helped someone believe, by living a quiet believing life. That's a part of God's great miracle.

That's the thing about us. Though we grew up miles apart, in different countries, there was so much that I could see in you, that I felt in me. Not that I could ever be as loving as you. That takes something, a gift that I wasn't quite born with. But yet, we both always tried to see the best in people, the best in situations, even though it sometimes takes me a bit do so, once I dealt with my demons. The same demon that haunted you at the end. Fear. But love was able to calm the demon.

So to you, for you, my Eva, I will try. I will try to be as honest with myself, and my readers, and my friends, and my family, and everything, that I can be. Because that is what you wanted from me.

Dance for me sweet girl. Until we can run, and dance, and play together, never once gasping for breath.

Wednesday, March 24, 2010

I have a lot of little news bits...

*started on night time oxygen, and I'm loving it

*changed enzymes to zenpep, hoping this will address some issures

*I have a cold of doom

*I'll be in Boston April 30th-May 3rd

Monday, March 22, 2010

Silly Canada

When I was a very little girl, I thought that since both Heaven and Washington were up, that clearly, when I looked at the sky, I was looking at the bottom of Washington, and the people in Washington were looking at the bottom of Heaven. Imagine my surprise when I learned that Canada was above Washington, and up meant nothing on a sphere.

Wednesday, February 24, 2010

The Elephant in the Room

A CF mom blog broke my heart today. The comments in it broke my heart further. Moms who plan on not telling their young CF kids that CF is fatal. Their reasoning is that it some how lessens the fight, or makes it more difficult. And my heart breaks in a million pieces for these kids. Because like it or not, CF is fatal. And that isn't stopped by positive thoughts and rainbows. Truth, reality, facts, they don't change the fight for a cure, the fight to live. They only make the urge to fight stronger, the will to live even more passionate, because the chance of dying is brought into focus. The following is an excerpt from my comments on the blog, and replying to a mom saying that being realistic makes their fight harder, something that totally baffles me, since we are ALL IN THE SAME FIGHT.

In reply to the blog:

This may seem unwanted, or out of line, but I beg you to not conceal from G that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.

Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.

Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or G, or any cystic, any less of a fighter.

And in reply to the comment that said I was making the fight harder:

I'm sorry that you feel that being realistic makes your fight harder. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.

I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.

I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.

I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.

When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.

Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.

ETA: I find it a pretty sad commentary that this CF mom blocked me from following her site. It won't start me from voicing my opinion and the damage that has occurred from not being very frank about the realities of CF.

Wednesday, January 27, 2010


Today Ginger was supposed to turn 29. Instead, her young son and devoted husband spend their first January 27th without her.

By all measures, Ginger was healthier than I was. Higher lung function, better weight, and less harmful bacteria. We chatted often at and I loved her humor and light. On my list of things to do while visiting the inlaws in South Carolina was to meet Ginger.

Then she got the swine flu...

and it was too great of a challenge for her CF lungs. Her death really shook me. It was one in a string of deaths this fall, but her decline was so quick, so head-spinning quick, that it really felt like it came completely out of nowhere, even though she did struggle for quite awhile.

On another note, it's quickly approaching a year since Jenn died. A year since I talked to my wonderful, beautiful, amazing friend. We may have never met in person, but I still count her amongst my closest of friends, and I know that she would do the same for me. The pain of her not being her is not as sharp. Slowly I'm able to feel more like the old Talana. It's hard for me to reconcile how deeply these people I've never met, affect me, my soul, and truly add to my life.

Wednesday, January 13, 2010

New Clinic

I had my first visit today with the Las Vegas clinic... something major for me, since I've never seen anyone for my CF except for the doctors at OHSU. First impressions? I'm in good hands. It was a long visit, but I talked to the nutritionist, social worker, nurse, RT, and doctor.

The waiting room was a little scary... the clinic is located near where Vegas starts to turn scary... the area that any large city has. My Portland clinic is far from this area, and Eugene isn't big enough for an area like that, so it was a change to be sure... but once back in the clinic (though I do have to say the check in people were very nice), it was made of awesome.

I was called back into the clinic area, when I got the good ol weight... still sucky... 104 lbs, leaving me with a BMI a hair over 18. My o2 sat (the amount of blood cells that are saturated with oxygen) was 96%, which was surprisingly good for being at the higher elevation of Vegas and with as coughy as I've been lately.

Then I talked through my CF with the nurse... then time for my PFTs. Given how junky my lungs have been, I didn't hold out much hope. Yet, I saw the best numbers I've seen since May, and the third highest I've had in 2+ years. WOOO HOOO! Even though this clinic uses a different predictor model, even my raw numbers were up. Hello FEV1 of 38%.

Then more meeting of people, more talking, more seeing where we needed to go. They were encouraged that I am seemingly stable. Concerned about my problems with malaborbtion, despite being on a very high enzyme dose. So, to address it, I'm trying one week on the newest enzyme, Zenpep, to see if it makes a difference. I'm also going on a course of cipro to address some low lying infection issues, as well as trying singular for SOB issues.

Also on tap is getting my yearly bone scan and doing yet another night time o2 study to see if I need it!

Saturday, January 9, 2010

You may think less of me, but this is what I think...

My friend Sarah, posted a link to this blog written by a breast cancer survivor about the recent meme that has swept through facebook. The one where women post their bra color in the name of cancer awareness. I participated (bright blue byt the way), but like many things on facebook that are the definition of "flash in a pan", I didn't really think that it would raise much awareness about breast cancer. But, of course, with anything, people are sensitive to it.

The blogger wrote about feeling left out from this meme, that was to raise awareness about her own disease. How it's insensitive to those that have lost their breasts to cancer, because they have no bra to wear. How life is radically changed for them because of the lack of boobs. Part of me feels for them, but a even louder part of me says "Boohoo". Why this shocking lack of compassion, from me? Because I would give up my hair, my breasts, even a leg to have a chance at being cured. But it's not that simple with CF. You can live without boobs. You can live without hair, get by without legs. You can't live without lungs.

Yes, cancer is tough. Chemo, radiation, surgery, and a radical jump from normal life into the world of the sick. You are guaranteed nothing about the outcome, only sure that the journey will be twisty. It's the path that I and all my CF friends walk every day... however, we all know where our journey's outcome will be... death by CF if something else doesn't get us first. Even with secondary cancers, a loss of normal functionality, and a number of other complications, it's not all or nothing with cancer.

Then as these thoughts, these emotions of "I would kill to be able to walk your journey for a cure", I feel horrible for lessening the suffering of another human being. For thinking that they just need to get over their lack of boobs because they are alive. Guess what, clothes don't fit? Oh well, you are alive to wear those clothes! Get funny looks in public because you don't fill out your top, or your hair is only an inch long after chemo... you know why, and you can be proud that you can be out in public. I'm not saying that the blogger in question, or any cancer survivor that is alive isn't absolutely grateful to be alive, but complaints about cosmetic issues that are the sole reason that they are alive really, really hurts me. Because I can't go down and have a body part removed to be healthy. Right now, I'm locked into a life that I will slowly get sicker and sicker. Until I need a lung transplant... where I am waiting on someone else to die... so I can throw my own Hail Mary at life. One, just like any cancer surgery, does not have a guaranteed outcome. But unlike a cancer surviver who gets the label of "cure" after 5 years of no evidence of disease, a lung transplant patient has a 50% chance of being dead at 5 years. If you are alive, you still take handfuls of pills a day, still have to be afraid of every germ that comes your way, and get regular scans to see if the very drugs that are saving your life may have caused cancer. How's that for irony?

I want to shake myself and day "get over it Talana"... at the same time wanting to shake these women that are alive and say "get over it, you're alive"!

Or every year, during childhood cancer awareness, it is common for people to post that cancer kills more than a number of other diseases combined... CF being on that list. I want to vomit every time I read that. Vomit at kids being lost at a cruel killer... vomit at the fact that these kids have a chance at a cure, when CF kids don't, so why are we even equating them. That they deserve more awareness because there are more children dying of cancer? A child dying of anything is not okay. Saying that you deserve a cure because it kills more, at the cost of a list of other diseases? The logical part of me knows that probably isn't what they are saying... but the emotional knee-jerk side callously says "I'd take a child sick with cancer over one with a 100% death sentence." And then I vomit on myself a little for thinking that.

So maybe I should make my own meme... what color of mucus are you coughing up today... post the color in your status for CF awareness... (pea soup green), though it may be insensitive to my CF friends who have new lungs, who don't deal with mucus anymore, but still have CF, but hey, I don't think they'll care that much.