Saturday, May 24, 2014

The Right Direction?

I am not superstitious, I really am not. And yet, I feel nervous writing this in case I jinx myself. In case, by writing these words for others to read it will make me unworthy of what is happening and everything will vanish as mysteriously as it came. But as much as I am currently doubting it, I am in fact, not superstitious so here it goes.

There has been a shift. A subtle shift. It is not that my breathing is necessarily any easier and I am not sure if my lung function increased at all, but there seems to be a difference in the way I feel each day. I am noticing I am doing so much more throughout the day and not feeling like I want to fall into bed long before my daughter is tucked into bed.

I can function like a human being again. I can make it through more than one outing without feeling like all of my energy is completely drained. I feel like I am slowly crawling away from deaths door, because really I was hardly living a life anymore. Not that I was deathly ill all the time, but it seemed that when I was "better" I wasn't my old self and it would only last a week at most before I felt horrific, completely useless.

Today for example, I ended up taking a nap for about 40 minutes. However, this nap allowed me to have enough energy to work in the garden, make homemade pesto and homemade ice tea (using herbs from our garden for both), and homemade mounds bars for dessert. I then did the dishes, washed the windows, vacuumed the whole house, wrote this blog and did my nails. And you know what? I am still standing and don't feel exhausted yet. A month ago, I would need a nap and still not be feeling well enough to do much all day besides caring for my little one.

I am also realizing why I may have been so sick. I feel like we, the doctors and I, were baffled at why I couldn't get better. I think there were some obvious issues like my immune system and body still recovering from the flu which resulted in continuous colds and illness. My body was repeatedly getting knocked down. However, I am almost positive I had an infection deep in a pocket of my lungs where mucus is completely trapped. The fevers were an obvious sign of infection, but oddly enough my mucus was thin and light in color so I never felt like I actually had a respiratory infection. I would feel better after abx (although my mucus already looked "good" so it never seemed to change much), but I would seem to fall sick again almost immediately with a cold that would result in a fever. I think I wasn't being treated long enough for how bad the hidden infection was, but since I had none of my usual obvious signs of respiratory infection we never thought to keep extending the abx. My increased airway clearance and nebs weren't touching the area of my lungs that were infected so they weren't making a difference.

This last appointment, I asked to stay on my meds (Levaqui and Bactrim) for 3 weeks instead of my usual two since it seemed that I would just start to feel "better" when my meds would end. I also started to worry about the lung pain I kept feeling on my left side which seemed to be a sign of infection. I think the 3 weeks of antibiotics plus the added weight gain is what may have finally given my body a fighting chance.

Like I said, I can tell my lungs aren't even close to where they used to be and I know it will be a long road ahead, but at least for now I feel like I can live my life the way I am supposed to with my amazing little girl and my wonderful husband. I can enjoy the daily aspects of life again and what could be better than that!

Monday, May 19, 2014

Homemade Larabar Recipe

I am venturing out to try something new for my blog. Today I am sharing... a recipe!! I am sharing this recipe because it is delicious, high fat, high calorie, delicious, easy to throw in your bag or purse, my entire family loves them, oh and did I mention delicious? Now if you Google Larabars you will find tons and tons of recipes, BUT there is actually a technique to them and it took me a while to perfect the Larabar so I decided to share my recipe that has been tweeked many times in order to make the perfect Larabar!

Homemade Cherry Pie Larabar
1c raw unsalted almonds
1 c dried unsweetened cherries
1/2 c pitted Majool dates
1T water

You will also need the "s" blade on your food processor.
I always double the recipe because they disappear so quickly in my house AND they freeze really well. In fact, I freeze them immediately after making them and take them out as I want them. They don't freeze solid so you can munch on them straight from the freezer if you choose. 

Put 1T water in your food processor (don't soak fruit like some recipes recommend because the texture will be super icky!) and slowly add cherries and dates. Keep pulsing until the cherry/date mixture sticks together and forms a sticky ball.
See how the cherry/date mixture is clumped together? This lets you know it is time to take the sticky mixture out.

Remove cherry/date mixture and set aside.
Cherry/date mixture waiting to be used.

 Place almonds in the empty food processor and pulse till nuts are at a rough chop (processing the nuts too much will release their oils and give you oily bars). 
Rough chop of the almonds

Slowly add the cherry/date mixture to the nut mixture. (This step is crucial because if you try to dump all the cherries at once it will burn out the motor on your food processor. Happened to me more than once, yikes!)
Almost done!

Remove nut and fruit mixture and place on wax paper.
It will seem crumbly at first, but as you work it the mixture will become stickier and hold its form

Use the wax paper to form it into a ball (it will be sticky so the wax paper keeps your hands cleaner!)

Flatten ball with your hands. Cover flattened ball of fruit/nut mixture with wax paper and use rolling pin to get desired shape and thickness.

Use a sharp knife to cut into squares or rectangles. My double batch makes 12, but I like to cut them big.
K and I always share the scraps from making the edges straight. It is our reward for all our hard work.

Wrap in wax paper, stick in ziplock bag and freeze (or refrigerate) and you are done! Make sure you enjoy one (or two or three) before you freeze them though!
All ready for the freezer!

This snack is healthy enough for anyone in the family to eat, but full of good fats which is great for us CFers. It is easy to bring along as a quick snack on the go and they freeze really well so you don't have to worry about them spoiling (not that they will last long anyway). Even my hubby who is not a snacker can't refuse a homemade cherry larabar and don't even mention them around me toddler, she is obsessed!


Friday, May 16, 2014

When Running Is No Longer an Option

Part of my current goal for my health is to gain weight, but more importantly to gain muscle. I am on an appetite stimulant and am quickly gaining the fat I lost through being so sick, but now I have the job of using that energy and calories and gaining as much muscle as possible, since it is a better weight to have. Muscle is much harder to lose than fat so I want to gain weight, but mostly in the form of muscle. The question is how to gain muscle and build my lungs when my lung function is so very low. I took for granted how easy it was to work out with 50% lung function. It seems like an unbelievably daunting, almost impossible task, when your lung function is so very low.

While discussing working out with my doctor last clinic he told me with the most empathetic tone that he doesn't think I should jog anymore. He feels it is too much of a strain for my body and I need to try things that build muscle, but are low stress on the body such as yoga, pilates, weight training on weight machines, etc. He was so sweet in his delivery, worried I would be upset being told I could no longer run, but in my head all I could think was, "YESSSSSSSSSSSS!" 

I started running so I could quit the gym because we needed to save money. Being sick is expensive! Co-pays, prescriptions and my hubby has had to take more time off work than he has sick days for because of my hospital stays and frequent sickness so we have been extra tight when it comes to finances lately. But in all honesty, I hate hate hate running.

So as my doctor requested I rejoined the gym. I had already started going to yoga again a few months back. I have to say being back at the gym and being back in my yoga studio makes me feel so much healthier. I know it hasn't been long enough to actually make much of an improvement, but being in the places I used to go to when I was my healthiest (right before I had K) makes me feel like I am that person again, the "healthy" person, the strong person, the fit person. I feel a new sense of hope, being in these places knowing that each day I am slowly, but surely making my body, my lungs, my spirit just a little bit stronger. Maybe, just maybe someday I can be that healthy strong person again!

Tuesday, May 13, 2014


I mentioned in a previous post that along with my lung function plummeting so was my weight. My BMI was getting close to the "underweight" category and the doctors thought that bringing my weight back up would help with my overall health and therefore help with my lung function. I can eat fine (about 3000 calories a day) when I feel well, but when I am sick, which is happening frequently now, I have absolutely no desire to eat. I also often didn't have the energy to really cook or make myself anything to eat when I was feeling feverish or ill. So I asked the doctors for an appetite stimulant to help me get out of my rut. Oh my goodness, I had no idea what I was in for.

The first day I took 2 of my 4 doses since I didn't receive it until late afternoon. That very same day I started to feel a little hungry. Within two days I felt like I always wanted a snack. I started opening the fridge so many times that Kaylee must have thought I had gone crazy. I was eating nonstop and still woke up starving in the morning. I think it helped that I was coming off of three weeks of antibiotics so I felt well. The combination of feeling well and having an appetite stimulant made me a ravenous pig!

I kept asking my husband if I looked fatter, a loaded question in most relationships, but I was hoping I looked a little more roundy. He kept laughing at me telling me it couldn't work that fast. Oh, but darling it did! I was 110 pounds (I am 5'4" for reference) last Monday when I started Megace. I am currently 117lbs only one week later! That is a pound per day! I actually was checking in the mirror today for stretch marks because I was worried I was gaining weight too quickly, but luckily found none. I only want to gain about 8 more pounds, but at this rate I will be there by next week!

I feel like I look better, I felt skeletal and weak when I was 110 and even the seven pounds has made a difference in my appearance. I also feel so much better. I am not sure if it is psychological because I look healthier so I feel healthier, but I do feel less weak and frail. Having an appetite makes me feel more normal as well. I may need to pick up a part time job to pay for all this food I am eating though!

Monday, May 12, 2014

23 Months

Dear K,
You are 23 months old today. Only one month before you, my baby, turn two! I am so proud of the little girl you are growing up to be. You really are turning into a little girl. The toddler in you is starting to fade and although I sometimes wish you wouldn't grow so fast, I love learning about the person you are becoming each and every day.

You recently learned to tell me your emotions, sad, happy, mad, and we are working on frustrated. This has made both our lives so much easier. When you have the words to tell me how you feel you don't need to act them out so much and we can work through them together.

Things You Like: You like manners. I know that sounds strange, but you expect people to use their manners around you. You are good at remembering to say please and thank you. You also say, "salude!" when someone sneezes and sorry if you accidentally bump into someone. You also like formal greetings and I often hear you making your stuffed animals ask, "Como estas?" and the response is always the same, "Muy bien, gracias" You also expect others to use those same manners with you, as you should. The other day while distracted I asked you to hand me something. You did and then standing at waist height your blue blue eyes looked at me with a little disappointment and you said, "mama, gracias?" Sometimes mamas need reminders too.

Things You dislike: The sun. Well, you actually like the sun, announcing each morning that the sun (solecito) is awake as if there was any doubt the sun would rise, you get excited when the sun dries your clothes, and when the sun shines through your prism in your window creating rainbows on the wall. What you despise is the sun in your eyes. You have little sunglasses that we have to carry with us wherever you go just in case the sun decides to shine too bright. You look like a rock star in those glasses so I am grateful for sunny days.

New Words: You have almost mastered complete sentences. Well, you do speak in complete sentences, but they often have errors and you drop a lot of the smaller words. You also add "the" often when it isn't needed such as, "Kaylee is on the dada" We all let our voices get a little higher at the end of a sentence when we ask questions, it is just part of speech, but baby girl, your little voice gets so high pitched when you ask a question it is hard not to laugh. Sometimes I act like I couldn't hear you just to make you ask the question again. Too stinkin cute!

Your Spanish is improving and you seem to be figuring out when to use Spanish and when to use English, You will often use the English version of a word with me and the Spanish version with your dada or when in Spanish class. There are still a lot of words you only know in Spanish such as colors, numbers, the alphabet, animals, etc but you are very aware that most words come in two version, English and Spanish.

What I Like About This Age: I am in LOVE with this age. I told your dada the other day I wanted to have another baby, but give birth to them when they are 20 months old. The past 3 months have been my favorite. You are so easy to please (for the most part), a great helper with chores and cooking (although it does take twice as long with my little helper), easy to entertain, extremely independent, and a great little talker. I am a little nervous for the "terrible twos" to approach, but I am sure we will figure it out as we go!

I do miss naps, but I am adjusting to your nap free lifestyle and my lack of breaks.

Tuesday, May 6, 2014

Port Flushes

I am not going to lie, sometimes having a port is a pain in the butt. Mainly trying to coordinate port flushes when you have a toddler, a husband with an insane work schedule, and life in general. This past month was the worst as schedules kept changing and I had to call and reschedule my appointment twice only to have my husband tell me that the final time I decided on didn't work either. I was approaching 6 weeks without a flush and decided that I could not risk another week and brought Kaylee with me. I couldn't get anyone to watch her and she really is such a mellow kid I figured it wouldn't be a problem.

Poor little Kaylee fell asleep in the car. I had to pull her sleeping body out of the car into the bright sunshine and carry her to the somewhat busy cancer center. She was awoken by the shuffle of the center and was groggy and disoriented when I signed in. The receptionist looked at Kaylee and asked if I had someone to watch her. When I told her I couldn't get childcare she explained that they don't allow children under 13 back where chemo is administered and a nurse would have to come and watch her while I got my flush. My daughter is social and quite charming, but she is not the type of child that will gladly leave mama to go to a stranger. In fact, I was positive hysterics, especially given her sleepy state, would ensue.

And just like that, I cried. Not in front of the receptionist, but in the waiting area. I am really not an emotional person so I surprised even myself, but there I was silently crying in the waiting area. I just felt bad. I felt bad for making my baby miss her nap, I felt bad for dragging her to so many appointments, I felt bad some stranger was going to take her from me, I felt bad that I have been so sick for so long which effects my energy level and my mood with her, I felt bad that CF already inconveniences her life so very much. I guess it all built up and poured over in that stupid cancer center waiting room. Luckily, only one person witnessed my moment of weakness and he uncomfortably avoided eye contact with me. I guess if you have to cry a cancer center is a pretty common place to do it.

By some act of kindness the nurse assigned to me snuck Kaylee back with me and we sat side by side in the infusion chair. Kaylee read her alphabet book, telling both the nurse and I what each letter was and what picture was on each page. At one moment she looked over at the nurse working on my port and said in a matter of fact tone, "clean, clean mama port!" She went on "reading" to us until my labs were done and port was "clean clean".

Kaylee reminds me over and over again that even when I feel bad for putting her through so many things most *almost* 2 year olds never experience that she is just happy to be with mama. She finds joy in life whether in an infusion chair or a busy doctor's office. She reminds me small children are resilient and can easily find joy and excitement even in the most boring situations. She is helping me to notice the beauty in all of life's experiences both good and bad. Everyone knows a mother spends her life teaching her children, but children teach their mothers the most important life lessons.

Monday, May 5, 2014

Toddler Tak Part 2

K does really understand what the word dry means, but uses it often to mean something that is not hot. K and I went on a date for coffee (for me) and croissants. So here was this little girl, not yet two, sitting in a coffee shot biting a croissants saying, Oh, this dry!!" She seemed like quite the snob!!

Every time she poops in her potty she always says, 
"Yay, poopoo! No caracol (snail in Spanish), poo poo." 
Thanks, for the clarification, Kaylee!

My husband and I were holding each other close dancing around the living room. After a few minutes we stopped to get on with our lives. 
K started shouting, "Boob boob on!"
We couldnt figure out what you wanted (especially since you are now weaned) until you pushed us together chest to chest (boob to boob) and said, boob boob on. I guess you liked our dance moves.

K was showing her dada President Lincoln and said, "Lincoln!"
My husband: "Yes, that is Lincoln." 
My husband has an accent and so the way he says Lincoln isn't really the same was I do. 
K upon hearing him say Lincoln her brows furrowed, "No, Lincoln!" 
Hubby, "Yes, Lincoln" (with his accent obviously). 
Kaylee, upset, "LINCOLN!" 
Me: "Just say it like a white person" 
He exaggerated an American accent, "Lincoln" 
Kay smiled, "Lincoln! No, Lincoln (with his accent) Dada!" 
Totally rude had it been an adult, but coming from an innocent kid it was really funny.

Saturday, May 3, 2014


Riding along the river, stopping to feed the baby ducks, watching the turtles sunbathe, and looking for fish under the greenish blue water the sun is shining bright. It is a beautiful Spring day as I ride my bike down the path homebound after a full morning of exploring all the river has to offer. Kaylee is the trailer behind me I peek back to see her lounging, feet propped up on the side of the trailer, sunglasses on and a water bottle in her hand.

"Mama!" Kaylee calls to me.
"What baby girl?" I ask turning my head slightly in her direction.
"Mama, Taytee happy!"
"You know what baby girl? Mama is happy too!"

And we were, happy in each others presence, happy in the sunshine, happy with the wind in our hair, happy we have one another to enjoy our days together. Days like these are what motherhood is all about. 

Thursday, May 1, 2014

Down The Rabbit Hole I Go

I have found myself in a place that makes no sense at all. It all seems to get "curiouser and curiouser" in the worst kind of way.

Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:

After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50.  So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:

Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs

And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.

 We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.

We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.