Rockin' & Rollin'

It's been a week on my newest IV drug and things seem to be going pretty smoothly. I am getting into a routine. I infuse my IV's at 10am, 4pm, 10pm and 4am. OK, so the 4am dose is pretty rough, but at least I've learned how to hook myself up in the dark, only half aware of what I'm doing. I'm finding that all of the spare time that I thought I would have, being off of work, is nowhere to be found. I have been one busy bee. The family and I went to a Cleveland Indians baseball game last Thursday, we went to Cedar Point Amusement Park's Halloweekends on Saturday and I went out to dinner with my girl friends on Wednesday night. I even went back to my exercise class twice last week! I was infusing my IV's all over town and feeling great about having the energy to get out and about... Until yesterday, when I crashed. I knew it would happen. I could feel my body starting to rebel. So yesterday was all about doing a bunch of nothing.

I think I overcompensated for having been completely out of it the week before. Nothing or nobody was going to stop me from doing everything that I set my mind to last week. I've decided that I am going to try t o pace myself for the remainder of my weeks left on IV's. I just can't get it all done every day without paying for it later. This will be a challenge for me, since I am typically and all or nothing type of girl.

So, I have a new attitude. I have got to limit myself and take care of myself. If I keep running myself ragged I will be no good for my family. I have to be kind to my body...I have to slow down...if I want to be available for my loved one's when they need me. My friend, Piper, reminded me of this when I was laboring over my treatment decision a month or so ago. She used the airplane oxygen mask analogy. I've flown a lot in my lifetime and over and over have heard the statement that "you must secure your own oxygen mask before helping others secure their masks". This is so true. I have also heard this time and time again as a Social Worker. We are always told to practice self-care to avoid burn-out. Again, you can't help others if you yourself are a wreck. This is what I need to constantly keep in the back of my mind when planning my day over the next few months. This is my new mission.

All in all I feel pretty good. The thrush is gone and so is the nausea. I continue to get my blood drawn twice a week to look for evidence of bone marrow suppression. This is the one thing that may derail this treatment plan. So far the bone marrow is looking strong. Good Stuff!

Thrush <- Nope, that's not the name of my new band...

Of all of the side effects I was expecting, thrush was not one of them. It just never crossed my mind. Not until I woke up a few days back with a hell of a sore throat and fire in my belly. At least it's an easy fix and I'm already recovering from that little setback.

Today was interesting. After going off of the Tigercycline on Friday I had been IV free. Today we decided that I would start IV Cefoxitin. I guess since I am allergic to Penicillin I had a 30% chance of being allergic to Cefoxitin also. Therefore, I has to be observed while getting the first dose today. Off to the Dialysis Center I went, where I was by far the youngest person receiving treatment by at least 40 years. This process took FOREVER! When they tried to order my drug from the pharmacy, the pharmacist refused to fill it. She said that 3 grams was way too high of a dose and she did not feel comfortable releasing it. Dr. Dazzle stepped in and saved the day, as he always does. He's Dr. Dazzle after all! That just got me to thinking that I really must be getting some powerful stuff injected into my veins if the pharmacist is concerned...huh...

The bummer about Cefoxitin is that it will likely cause bone marrow suppression. This is concerning in my case, because I chronically have a low white blood count. The doctors have often wondered if this low white count was responsible for my lungs being scar-free for so many years even after enduring many lung infections. The by-product of the white cells is elastase, which is what causes the scarring. Without many white cells, there's not a lot of elastase and in turn there is less scarring. Interesting stuff, but it's just a theory. In the situation I now find myself, my low white blood count may be a hindrance. Having worked with cancer patients for 12 years I know that they are often given Nuepogen injections to boost their white counts after chemo. Therefore, I asked Dr. Dazzle if he could look into this option for me if the need presents itself. I just hate the idea that I keep failing on all of these medications. I really want this one to work-out. The only other crappy thing about this antibiotic is that I will have to infuse 4 times a day, which means I have to wake myself every day to infuse.

Soooooooo, I tolerated the Ceftoxin very well today and we're off on a new, different adventure!

In fun news, I finished "The Hunger Games" a couple weeks ago. I am almost finished with the second book in the series, "Catching Fire". By next week I should be able to finish the last in the series, "Mockingjay". These are amazing reads! Tons of action, a bit of love and some politics thrown in for good measure. I highly recommend this series!

Video Blog #2

Needing to Vent

UGH... This treatment sucks! I need to vent...if you don't want to listen to me rant you can stop reading now.

This treatment is brutal...absolutely brutal. The nausea is overwhelming. Nothing helps. Nothing takes it away. Nothing makes me feel better. I am now on 3 different anti-nausea meds. I can't function. Each day I have been home I have been able to take my kids to school and do NOTHING else. I come home and collapse. I stare at the TV. I watch whatever channel was left on from the night before. I have no interest in finding the remote to change the channel. I have no interest in reading. I have no interest in opening my laptop. I hope that someone will put some food in front of me at some point during the day. I am making no plans. I can barely get out of bed. I would love to "live life to the fullest", but right now my life involves me laying in bed...trying to talk myself into taking a shower...feeling guilty about the extra burden my husband has to deal with now...wishing that it would all go away.

I peel myself out of bed twice a day to follow bunch of complicated steps that involve measuring, dissolving, remeasuring, syringes, sharps containers, saline, vials...just to infuse myself with this vicious medication, that some people playfully call "tiger", that is eating away at my stomach lining. The thought of the medication, the sight of the medication and especially the smell of the medication give me a visceral reaction.

I am only one week in...7-11 weeks to go. Something has got to change. Please don't tell me that you know I can do it. I know I CAN do it too. It's just hard right now...it's really, really hard.

I Think I'll Take That Wheelchair Now...

The good news! I'm home! We arrived home last night around dinner time.

I was doing so well with this treatment initially. It was all going so smoothly...until they got me up to the 50mg of Tigercycline. I had one really bad nausea day in the hospital, but now it's just annoying. It's very similar to morning sickness, but I have no little bundle of joy at the end of the rainbow to look forward to. I am on anti-nausea medications, which mask the nausea, but make me EXTREMELY exhausted. I guess it could be much worse, but this low-grade nausea and exhaustion is wiping me out! So much so that I have no interest in picking up a book or the computer. Writing this blog post is a stretch. So much so if they were to offer me a wheelchair now I would gladly accept.

I am also overwhelmed. I have so many medications...it's difficult to keep everything straight. I have to mix my own IV's before administering. I have to use a syringe and measure out sodium chloride and inject it into a vial of powder, which is the actual Tigercycline. I have to wait for it to dissolve, then measure it our with the syringe and inject it into the IV container with the saline. Then I move on to the SASH procedure. I then have to take a syringe and measure out a specific amount of Amikacin that I need to mix with albuterol and nebulize. A HUGE thanks to a fellow CFer who got me out of the Amikacin jam I was in!!! You know who you are! In total, I am on 4 antibiotics, two anti-nausea meds, nebulized albuterol, singulair, Vitamin D and a super-strong probiotic. I can't believe the body can tolerate this much medication...this many chemicals! I can't help but think about what my body is going to suffer, due to this invasion. I really hope the benefits outweigh the abuse to my body.

Basically, I'm just laying low. I'm sleeping tons and trying to spend any time awake with my family. I really wanted to be well enough to get back to working out, but it doesn't look like that's happening anytime soon. I'm just hoping my body gets used to these drugs and that I gain some energy over the next few weeks. It will be a huge bemmer if I feel like this for the next 8-12 weeks while on these IV's.

A huge thanks to my mom for watching my kiddos and doing all of my laundry while I was in the hospital. That was priceless. Another huge thank you to my amazing friend, Elizabeth, who brought dinner over for my family last night. It was such a whirlwind of an evening, but it was great to take some time out to eat yummy food at the table as a family without having to worry about cooking! These were the greatest gifts we could have been given yesterday :-)

The Before & The After ~ Thoughts on CF and 9/11

Today I am reflecting on that most horrible of days 9 years ago. I remember every detail like it was yesterday. I was in my car driving on 90 West heading toward Toledo. I had a meeting at a hospital for work later that morning. Around 9am I got a call from my boyfriend, now my husband, saying that an airplane just crashed into the World Trade Center. Details were still sketchy. We thought it was just horrible that a plane crashed and it was into a major building. I had more than an hour left on my commute, so I listened to details on the radio. Soon, my husband called back to say that a second plane hit the other WTC tower and that a plane has been hijacked and is heading toward the White House. The visceral feeling that stirred in my gut was something I had never felt before. Now it was certain that the US was being attacked. I felt helpless. I felt unsafe. I felt panicked.

My husband, as a police officer, was called into work. He seemed to remain at work for days on end. Everyone was on high alert. They needed every force available. My father then called me during my commute. He had to work for days on end too. He worked for an airline and was dealing with stranded passengers for days. He was the one who told me about the path of the forth plane. The forth plane was known to be hijacked and made it to the Toledo, OH area, turned around and was heading back toward Cleveland. It was somewhere just overhead when my father called. He was concerned. This made me concerned. I couldn't see the plane, but I know that they were in contact with the Cleveland air traffic control when the plan crashed in Shanksville, PA. If it had crashed 15 minutes earlier it would have been in Cleveland. Only later did I start thinking about what was happening on that plane when it was right overhead. This would have been the time that the passengers were planning their attack on the hijackers. Some were already dead. People were desperately calling their loved one's to say their final goodbye's.

All of our the buildings in Cleveland were evacuated. Everyone was sent home. I was stuck in Toldeo. I finally arrived at the little community hospital in Toledo, OH. My first look at the destruction on TV was in a Cancer Center waiting room with many cancer patients waiting for their treatments. I was frightened and felt shaky. I went forward with my meeting, but cancelled the remainder of my meetings so I could get home. I needed to be home. I couldn't be in this city that was not my own, with people I did not know, at this scary time. When I arrived home I didn't feel any safer. I was no less confused. I was glued to the TV footage. I felt helpless.

Even today I automatically think of any event as being before 9/11 or after 9/11. If I am reminiscing with a friend and we talk about something that happened in 1995, my automatic first thought is that it happened before 9/11. If I see a picture from the year 2000, sometimes I examine the faces and think about how none of us knew what was to come, only a year in the future.

Often times tragedy creates a before and after situation...where things were one way before and they will never be the same after. It can happen in an instant. I think for many people the diagnosis of Cystic Fibrosis is their moment in time that changes everything. I don't doubt that for quite some time my diagnosis was my mother and fathers moment in time. I was diagnosed at the age of 2. In my mind, I never had a before when it comes to CF. My CF has been my always. I sometimes think about if it would have been better to have been diagnosed in adulthood. Would the lack of knowledge about CF have made growing up easier. I'm not sure. I know that my life would probably look very different. I selected my career as a result of my personal experience. I may be something completely different than a Social Worker had I not had my earlier experiences. I had my children before the age of 30...there was somewhat of an urgency. Maybe if I hadn't known I would have taken my time and have totally different children now, or none at all. It's just interesting to think about...

So today I am thinking a lot about 9/11, the people who were lost, the fear we felt as a nation and all that has happened in these nine quite interesting years...

Day 2... ZZZZZ's

So we're coming to the end of day 2 and shockingly I am still tolerating all of the meds they have given me. The Tig that causes severe nausea is being given to me in phases. I need to get to the point where I can tolerate 50mg. Last night and this morning I was given 12.5mg. Tonight we will bump it up to 25mg. I have had NO nausea at all! I am thrilled! So much so that I had chili cheese fries and Resses Peanut Butter Cup pie for lunch! Maybe this is Operation Gain 20 Pounds, instead of Operation Kick Mycobacterium's Ass???

Today I had a complete hearing and vision screening. We needed a baseline so we know if I start losing or having changes with my vision or hearing along the way. An interesting thing happened on the way to these screenings. They came to pick me up in a wheelchair! I was horrified! I am NOT sick after all. I pleaded to please be permitted to walk...the appointment was several buildings away. They would not budge. I know it's for liability purposes, but I was still horrified. We have to wear masks whenever we leave our room on Rainbow 7, but we're allowed to take them off when we leave the floor. To top things off, the transporter made me wear my mask throughout the entire transport. I AM NOT SICK. I can walk...I can even run... I know this was a psychological thing for me. People stared in the hallways...people stared in the waiting room. I felt like I was having an out of body experience. Look, I was only going to get my hearing and vision checked. I'm sure these people thought I was on deaths door...PICC in my arm...mask on my face. As I was sitting there, angry, imagining what I must have looked like, I started thinking that maybe I really am sick. Maybe that's why I'm in the hospital, on IV meds along with a myriad of oral medications trying to kill the infection that has infested my lungs. Maybe I really am sick after all?

After the 3 hours it took to fully examine my ears and eyes...some tests I have never done before...I regained control. I again began pleading my case about not needing transport back to my room. They said that they could not release my chart to me, they could only release it to someone transporting me. I told them that I would be walking back to my room now and that they could send my chart back later. I left. Whew.

I have obviously had to be transported around hospitals in wheelchairs and beds in the past, but it just hit me differently this time. My friend Josh said he was happy I had this experience. He told me it sounded like a humbling experience. That it was... That Josh is a smart boy!

So the only really exciting thing that has come out of these few days is that I have gotten about 18 hours of sleep, including two big time naps both days. I guess that's more exciting for me than you, the reader. I think living on 3-5 hours of sleep for the past few weeks led to my body just shutting down as soon as all expectations of me lifted. I'm actually getting ready to get some more zzz's. Feels good and I feel great so far!

Day 1...Not So Bad!

Well, I've made it to the end of day one. I got my PICC placed very soon after arriving. I posted some gory pictures they took of the procedure on Facebook. I wanted to see what they do, but I refused to watch the action live. This placement was not as easy peasy as I would have liked. They stuck me twice and tried to thread the line, only to get resistance. That was a crazy feeling. The third time was a charm. Even with all of the Xanax, my anxiety was increasing with each failed attempt. I could feel my face getting really hot. Now that I've had a PICC in the past I feel completely comfortable with this thing. I've already laid on that arm to sleep. It took weeks for me to do that last time! I am officially a PICC pro! I'm not sure this is a good thing?

Today we started the Tigecycline in a very small dose. This drug is know to cause horrible nausea, so I was given Zofran before even being given the med. Tig is the one drug that I will do for 8 weeks by IV. We also started the Linasolid and Azithromycin oral. I had no side effects at all! At least not yet... Tomorrow I will have my vision and hearing test completed. We need to get a baseline, since vision and hearing loss are side effects of using these drugs long-term. Since I will be on everything, except the Tig, for a year we really need to keep an eye on these things.

All in all it was a good day. I fell asleep at 5pm and slept until 9pm. Think I may have been tired??? Thank heavens for Ambien, which will likely keep me on a good sleep schedule! I plan to get out of here on Monday if all goes well. If it goes like it has so far, that should be no problem. I'll finish the 8 weeks of IV's from home. I think I'm pretty much a pro at that now too. I wonder if this is a good thing?

My First Shot at Video Blogging

I'm thinking I may be video blogging more while I'm in the hospital. Just wanted to say "Hi" and make sure I know what I'm doing!

My Wish for the Upcoming Year

I sometimes cry in the shower. It's private and there is no mess to clean up. I can also get the tears out of the way before I put on my happy face for the day. It works for me.

I don't cry for myself. I cry for my family, especially my beautiful children...especially my daughter, Emma. Emma has had a really rough 2010. Finishing her first year of elementary school, the 1st grade, proved to be very traumatic for her. Emma's 1st grade teacher was diagnosed with a rare brain disease in February and died on May 3rd. This was the teacher that Emma told me earlier in the school year, before she became ill, was like a second mother to her. What was supposed to be a typical right of passage for any child, completing first grade, became a lesson in grief and loss for Emma. Watching my daughter grieve and not being able to take away her pain was excruciating. Starting in February Emma started complaining of belly pain. Many visits to doctors and specialists later, we came to the conclusion that these were somatic symptoms. Her anxiety actually makes her physically ill. Whenever Emma said, "Mommy, my belly hurts", she's really saying, "Mommy, I'm scared" or "Mommy, I don't feel safe". I am certain I have the only 7 year old child who walks around with a pocket full of Tums everywhere she goes.

The school year ended and so did the belly aches. Until I was hospitalized in late June. We had a few belly aches and some behavior issues that were unusual, but nothing too bad. I was only in the hospital for 3 days and on IV's for 2 weeks. I felt like we got through it without too much trauma for the children. We told the kids the what's and why's of everything that was happening with mommy and have been honest in an age-appropriate way all along. A few weeks ago my husband told me that Emma asked him if he had a disease.

THAT BROKE MY HEART...

She's taking stock of her options. She knows that not all people with diseases live. She learned first hand that sometimes even being a really good person doesn't save you from the harsh realities of the cycle of life. She learned that anyone's time can come too soon. She learned all of this in first grade. She knows that Mrs. Williams had a disease and Mrs. Williams died. She knows that mommy has a disease, she's deducing that mommy may die. I have told her that the doctors are doing everything they can to make sure that I get and stay healthy for many years to come. I know from working with cancer patients that lying to children about disease is not recommended. I can't tell her I'm going to be OK. I don't know that I am going to be OK. The truth is that my disease is terminal. I have been aware of this truth since the age of 2. The truth is that most of us, more than half, with this disease will die before we reach our 40th birthday's. A lucky few...a handful...will reach their 50's. Things are trending in a positive direction, but who knows if we will find the illusive cure in my lifetime. I'm getting older.

So what do I tell my daughter? How do I tell her? How can I take away her fear and pain?

There will be no escape over the next year. I will start my treatment on Thursday and will be treated for ONE YEAR or longer. I will be on IV's, nebs and oral antibiotics for the first 8 weeks. Then about 4 months on nebs and the remainder of the year will just be easy oral medications. This is really powerful stuff. I will be getting millions and millions of milligrams of medication. It will likely make me sick. I may get worse, before getting better. There will be no hiding this from my children. I am going to do everything I can to normalize this experience for them. Similar to the approach we take with my Vest treatments. I let the kids put the Vest on and sing. They love it! To them it's just something mom's have to do every day. Yet, they know that normal mom's aren't hooking up their own IV's at the breakfast table. They know that normal mom's don't walk around with PICC lines. Normal mom's don't have a home health nurse come weekly to take labs and do dressing changes. I'm going to do my best to be strong for my kids. Maybe I'll let my daughter hook up my IV's sometimes. Let her feel involved. I'm going to smile through it and tough it out. As long as I can use my blog to express my weaknesses, I will do the best I can to "stay strong" in the real world. I have GOT to protect these children...these gifts that I have been blessed with...

I just worry about my Emma. My wish is for her to open up to us. My wish is for her to not be frightened or lonely. With everything that will be going on with mommy, my wish is for her to feel safe. My wish is for me to have enough energy to be able to cater to my children's' needs. My wish is for no belly aches. If you're the praying kind, please pray for no belly aches...

il bel far niente

Thankful Thursday!

il bel far niente is "the art of doing nothing" in Italian.

This Thankful Thursday I am thankful for my employers awesome disability benefits! I have had a job without a hiatus since the age of 16. I took two maternity leaves, but I had a needy infant to care for during each of those leaves. That was really hard work in and of itself. I have worked part-time when going to school and full-time whenever not in school...my entire life. I feel very fortunate to have had the health and energy to have been able to work. This is not the case for all CFers. With a body that is continually fighting infection, many are just too fatigued to be able to work and take care of their health. In the past couple years, since my health started declining, I have been exhausted. Honestly, I think it's a combination of my disease process, working full-time, raising 2 1/2 kids, being a girl scout leader, trying to work-out 4-6 times a week and managing a household. It makes my head spin just thinking about it.

Next Wednesday I will be starting a 3-4 month medical leave from work. I am going to focus entirely on my health and family. I am excited beyond belief! I can hardly contain myself! I feel like I'm preparing for vacation. Jealous? You should be! Unfortunately, I'll probably be puking my guts out the entire 4 months from the harsh medications I will be taking, but at least I won't be puking and working at the same time! I can focus entirely on puking.

So during my leave I am going to focus on "il bel far niente". I will be infusing, nebbing or vesting for about 5 hours a day, but when I'm not... I am going to try to meditate to clear my mind and put my soul at ease. I am going to rent a movie each week. I am going to read, read, and read some more. I'm going to play with my kids. I am going to rest. I am going to heal. I am going to wear my favorite Cleveland Brown fuzzy slippers most of every day. I am going to even practice doing nothing at all!

I need your help. Please suggest some must read books and must see movies. I plan to keep everyone posted on what I'm reading and watching.

By the way, I love my job! I really, really do! BUT...Yay for awesome disability benefits that will afford me this time to get healthy and heal!