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.