Lessons Learned ~ A Look Back at 2010

Wow, 2010 has been quite a year. I've been reflecting a lot the past few days, as this year comes to a close. This was a year full of learning new things for me...new things about my body, new things about my disease, new things about the meaning of friendship, new things about faith and new things about love.

I have learned what my body needs to thrive. At the beginning of the year I was working out 5-7 times a week without fail. I pushed myself to the limit. I worked out when I was tired and sore. I worked out when I was sick. This was great for my muscles, but wreaked havoc on my lungs. My PFT's were the lowest they have been in my life when I was working out the most. When I started my latest treatment protocol in September I made a deal with myself. I needed to cut myself some slack. I needed to not push myself harder than my body was telling me it could handle. Sometimes, I just needed to rest and heal. Throughout my treatments there were 2 weeks that I never got to my workout class. There were several weeks that I only went once. I never pushed it and if I was tired I quickly made the decision to skip. I think I made the right choice for my body. My PFT's increased by 11% over the past 4 months, to a number I haven't seen in more than 5 years! I am back to trying to work out 4-5 times a week, all while making sure to listen to my body first and foremost. I think my body and I are starting to speak the same language. I will no longer push my lungs to the point of exhaustion.

This may be good or it may be bad, but I have learned a tremendous amount about Cystic Fibrosis this year. I learned tons about mycobacterium of all sorts from discussions with my health care team, talking with others who have it and doing my own research. So much so that I have burned myself out. When I cultured H flu in November I read a couple paragraphs about it and left it alone. After my appointment a couple weeks ago I found out that I cultured MAC, a new yeast and another bacteria that I never even got the name of. I was told not to worry about any of these latest bugs. It's not really my nature not to worry, but I am happily taking that route this time. I have reached information overload. I am feeling very well, my PFT's are up and I am in the maintenance phase of my treatment for the next 9 months. I have made a conscious effort to live more and worry less about what is growing in my lungs. Maybe that will be my New Year's resolution. "Live more...worry less"! Not an easy task for a neurotic like me. However, as long as I'm being closely monitored and I trust my health care team, I don't see why I have to focus so much on some stupid little bacteria. I'll let you know how that goes!

I learned so, so much about friendship this year. I received an amazing amount of support from many friends that I have never met...those who have walked this path before me. People who knew what it was like to live in this skin. I'm not certain what I would have done without the support and love of these kindred spirits...you all know who you are!

I think the biggest lessons learned came from my real life relationships. I feel like I became intimate very quickly with the idea that difficult times allow you to learn who your real friends are. I can freely admit now that I needed help. I was really, really hurting, overwhelmed and scared. I went from being someone thriving with CF, to someone desperately trying to understand where it all went wrong. I tried to put on a happy face, for everyone else's sake...mostly for my kids sake. I had a few very dear friends who saw through this facade and rescued my spirit...whether with soup (Cathy), weekly cards/gifts/phone calls (Lynn), with opportunities to vent and a HUGE hug at just the right time (Elizabeth) or with frequent emails from a neighbor asking what I needed (Alan)...among other beautiful friends... I will never, ever forget their kindness. I have learned that sometimes a small gesture when someone is hurting goes a very long way. I am going to work really hard to try to model myself after these truly remarkable women (and one guy) who made my world a little less scary.

Unfortunately, I also learned that when you are really sick several people that you think would be able or willing to lend a helping hand completely disappear. People I would have considered friends for several years pretend they have no idea what's been going on with my health. I know, I know...people have busy lives. Yet, sitting on this side of the fence I can assure you that the absence of a phone call, email or note felt like a slap in the face. At the same time, although hurtful, I am glad that I had these experiences. I would much rather surround myself with genuine people who can see beyond themselves. Especially, since I am trying hard to practice this myself. It turned out that this year was a great exercise in plucking out the true friends from the bunch.

I am a firm believer in "to each his/her own" when it comes to religion, faith, spirituality. You can believe, not believe or believe in a Higher Power that is different than my God...I'll still like you :-) I don't think everyone has to believe what I believe. I was raised strictly Lutheran and was sent to small Lutheran schools up until college. I believed, I'm just not sure in what... This year I found my church home. I found a soft place to land. I am learning a lot about faith and community by being a part of Heartland. For this I am thankful!

Love. That is how I would describe this holiday season. I felt it more deeply this year than any other. Love for my children, my husband, my family, my dear friends... I found myself so overwhelmed with peaceful and loving feelings over the holidays that I just wanted to freeze time. My friend Jenny was in the hospital just before Christmas and she wrote of

her gratitude for life and love in her beautiful post... I Came Here to Live . She hit the nail on the head with this one. Yes, this is how I feel! It's a must read!

My family went on our yearly trip to our cabin in Hocking Hills just before Christmas. With 3 kids, sometimes too much togetherness can be overwhelming. This year it was just right.







Everything about the holidays seemed just right for us this year. I have never felt more love and I have never felt more loved.

Here's hoping I don't need to learn nearly as much in 2011!!!
Have a safe, healthy and happy New Year!

A Final Gift for Jill

I was very surprised to receive a Facebook email from my friend, Jill Svancara, a couple days ago. Jill died of CF in July during one of my hospital stays. Having seen and communicated with her one day and hearing of her death the next shook me to the core. Read about my thoughts regarding Jill's struggle and death in my post, Breathe Easy, Jill...

It turns out that Jill's husband wanted to communicate with me. He sent me the email in Jill's name. His message was very heartfelt and touching. He has been following my blog and asked if I could share an important message from him. I know that Jill would be proud knowing that even after her death, Clint is still working hard to raise awareness about the importance of organ donation. Clint's message is below:

A Christmas Gift for Jill


This Holiday season brings a change for my family. This will be our first Christmas without Jill.
Jill was a daughter, a Mother, and my wife.

In July- 2010 Jill died while on the waiting list for a double lung transplant, she was forty two. You see, Jill was born with Cystic Fibrosis, a genetic disorder that particularly affects the lungs and digestive system. Cystic Fibrosis is a disease that affects about 30,000 people in the United States. Years of lung damage had brought her to the point where she could no longer function without a new set of lungs.

Each day about 18 people die while waiting for the gift of life, unfortunately Jill was one of those people.

As many of us celebrate the birth of Christ, we know that his birth marked the beginning of the Christian religion. In his death, he gave us life. Shouldn't we follow this example from the man we called Teacher. In the unfortunate event of our life ending, we can and should give life back.
In Ohio about 50 percent of license drivers are registered to be organ donors. It only takes a moment to go on line http://www.donatelifeohio.org/ and register, or say yes when you re-new your drivers license. Most States have Organ Donation Registration on line, or you can visit http://www.organdonor.gov/ for more information. For parents, I encourage you to explain to your family the importance of this gift, and what it means to so many.

Please, I ask that you find it in your heart to give Jill this Christmas gift that will cost you nothing, but is priceless - become a registered organ donor. We cannot live for another person, but we sure can give life to others- but we must make that choice. While Jill faded, she gave the only gift she had left to give, and that was HOPE. Please accept her gift of HOPE, and return the gift, by becoming a registered organ donor.

Please e-mail my message to your trusted family, friends, and work associates – Lets use the power of the internet, or read it at your church, or maybe post it on a board somewhere. My hope is this Christmas we can get as many people as possible to become registered organ donors......that is the only gift I can now give to Jill – Hope for others. Will you help me?

Thank You, from the bottom of my heart!
Clint Svancara
Bay Village, Ohio

Top Ten Reasons I'm Thankful for Dr. Dazzle

It's Thursday again. That means it's time for Thankful Thursday! Today I am Thankful for Dr. Dazzle. Here are the top ten reasons why:

10) We graduated from high school the same year. Yep, both from the class of '93. It took a while to get used to the fact that my doctor is a "young" as I am, because I am young...right?

9) We like much of the same music and we both have small kids, so there is never a lack of things to talk about after we finish talking about blood, snot and poop.

8) One of his little patients told him that he's cool, because he has good hair. I agree!

7) He is a perseverater...in that he perseverates. When a new symptom arises he mulls over the pro's and con's of the next move. You can actually see the wheels turning in that little head of his. Sometimes he thinks aloud and talks to himself. It shows me that he really puts a lot of thought into my care.

6) He is super duper aggressive in his approach to CF. Since I started seeing him in August my PFT's have risen by 10% from the baseline that I sat at for a couple years. That was lung function that I thought was gone forever. Today he told me not to worry much about the new MAC that I cultured. I am being treated for it now. He said that I will culture lots of bugs over the next 60 years. We'll beat them as they come. Yippee!

5) Dr. D ALWAYS emails or calls me back in a VERY timely manner. I appreciate this immensely, because I am one of the most impatient people to walk this Earth.

4) He doesn't treat me like I don't know what I'm talking about...even though I often don't know what I'm talking about. Basically, he doesn't treat me like I'm just a dumb patient.

3) Dr. Dazzle is both realistic and positive. He tells it to me straight, but then gives me the plan of action. When I was struggling with what to do with regards to the m. abscessus he told me that this was a very serious bug that is often responsible for very serious lung damage and sometimes death. However, we caught this early enough where we can treat, suppress and possibly eradicate this bug for good. I then got an email detailing the treatment plan and all potential side effects, along with what we were going to do monitor the side effects.

2) Dr. D texted my lab results to me on a Saturday during the Ohio State vs. Michigan football game. Seriously! My lab results were more important to him than that game! I have never gotten a text before that detailed my white blood count, platelet count and my last culture smear result...along with telling me to enjoy my weekend... It was good stuff!

1) He listens to me and actually hears what I'm saying. He remembers what I like and don't like, along with my thought process and he takes in all into account when offering a plan. I think we have a true partnership when it comes to my treatment plan. This is what I appreciate most!

It was really difficult for me to choose to change Pulmonologists over the summer. I was scared and nervous about what I might get, even though I knew it was time for the change. I truly feel like I've won the Pulmonologist lottery on this one... Yeah me! On this Thankful Thurday I am ever so thankful for Dr. Dazzle!

Bittersweet Appointment

Today I finished my IV's. I had a clinic appointment and got my PICC pulled! Sweet relief! Today was 3 1/2 months in the making...the end of phase one of my treatment of Mycobacterium Abscessus (I am a HORRIBLE speller...and realize that I have spelled this wrong almost every time I've written it over the past several months...oops). The plan going forward is to continue nebulized Amikacin every other month for at least a year. I will continue the oral Zyvox for one year and I will continue the oral Azithromycin for life. I can certainly handle this plan!

I anticipated that I would be jubilant after today's clinic visit. I imagined that I would have stable PFT's, the m. abscessus would be gone and I would return home to my normal life. I knew it wasn't going to go as I imagined when the first PFT I blew was down 6% from last month. After three tries I was able to improve, so I actually only had a 3% decline overall. Not horrible, but I expected further improvement after all of the blood, sweat and tears I put into this treatment plan. Yet, it was not to be today.

Then I headed into my appointment with Dr. Dazzle. One of the first things I asked was about my last cultures. I really wanted to know if the H Flu was still present in my culture from last month. The look on his face when I asked told me immediately that all was not well with my cultures. I have not cultured m. abscessus since September, about a month after I started my treatment. This is great news! So what's new? I now can add Mycobacterium Avium Complex...also known as MAC...to the list of bugs living in my lungs. There must have been a buy one get one free deal going on when I contracted my mycobacterium. MAC is common in immunocompromised people, especially AIDS patients. It also tends to like living in the lungs of people with CF. This avium strain derives from birds. I don't even like birds!!! I guess it can also be found in dirt, dust and water. It is not as destructive as the Mycobacterium Abscessus can be, so it is often not treated until it progresses. This MAC was discovered after the full eight week examination of my late September culture. Dr. Dazzle thinks that the drugs I have been on over these last few months should have suppressed the MAC.

Yet, I'm bummed. My last 2 appointments have resulted in culturing 2 new bugs. This MAC is another one that will never go away completely. It can only be controlled. I did everything right. I have worked so hard all fall to get my lungs in tip top shape. In spite of my efforts, I still lost some lung function and picked up two new bugs. Today I learned that CF has a mind of its own. There are aspects of it that I can NOT control, despite my best efforts. Piss off CF!

Dr. Dazzle and I chatted a bit about my Brochiectasis. Mine is pretty much all in my upper lobes. My upper left lobe is the worst. That damn upper left lobe has been a thorn in my side for a while. I also met with one of the research nurses. They want me to participate in a quick one day study to test out a new way of doing Nasal PD's. It will involve getting another PFT, a sweat test, a nasal PD and nasal scrapes. So I'm heading out to the hospital again tomorrow for another all day round of procedures, this time for the sake of research. I'm bummed that I don't qualify for the Vertex study :-( Yet, they have a phase 3 Spireva study that I will start in January. I was involved in the phase 2 version of the same study.

Basically, I'm a bit frustrated that it always seems that there has to be some bad news to even out the good. I am going to work on focusing on the fact that I feel good and I am PICC free!!! I am heading out to a celebratory dinner with my family! I did 3 1/2 months of IV's without completely losing my mind... For this I think I deserve some sushi!

If you heard REALLY loud music and lousy singing coming from a car today, it was probably from me. This song makes me feel GOOD and represents how I feel about the end of this era!

Thankful Thursday

I did a few Thankful Thursday's a while back, but fell out of the habit. Ronnie & Mandi just encouraged everyone to start again...so here I am writing on a Thankful Thursday!

Today I am thankful for soup.

It's the little things, isn't it? Today I spent the morning with my friend Cathy Hawk, a full-blooded Italian, learning to make pasta fagioli. We had a great time and I picked up some wicked soup-making skills! My friend Robin Davis joined in on the fun too! I love these ladies!!!

Even more important than the soup, I am thankful for Cathy's kindness over this past 4 months during my IV treatments. Cathy is a newer friend. I just met her at the beginning of 2010. Our girls were in Gymnastics together, then we found out that we went to the same work-out class. When Cathy found out about my illness from my blog she said that she didn't know what to say, but she knew how to make soup, so that would be how she would take care of me. Cathy kept up with my blog. Every single time I had a rough day or a turn for the worse I got an email from Cathy telling me that soup would be delivered the next day. It ALWAYS came at just the right time...when I was really down and out. Cathy took care of me. I will NEVER, EVER forget her kindness and love. I get teary thinking about it. I'm not sure I can ever repay her adequately.

So today, I am thankful for soup...Cathy's soup!

It's a CF Thing...

Over this past year and a half I have "come out" of the CF closet. My family and closest friends knew about my illness, but many of my acquaintances or co-workers had no clue. It was quite easy to hide. Or, if they knew, they assumed that it must have not been so bad since I "looked" fine from the outside. This past 6 months of hospitalizations and almost constant IV treatments probably took some by surprise.

I have found that some people are still confused about my illness, since I still look the same on the outside. I think it's so easy for people to understand that someone is sick when they see outward proof of an illness or aggressive treatment. Much of the impact of CF is internal. So, I wanted to share some of the outward physical manifestations of Cystic Fibrosis, just to raise awareness.

Cough: A CF cough for most is very congested sounding. A coughing fit can last several minutes. Most people with CF cough every single day...I do. Some people with CF cough so hard that they open up a wound or blood vessel in their lungs and can cough up large amounts of blood. This is called Hemoptysis.

Salty Skin: In the middle ages in Europe they were informally diagnosing children with an unknown disease, simply based on salty skin. They used to say, "a child who tastes salty from a kiss on the brow...is hexed and soon must die". The disease that they were talking about was CF. My sweat is salty. I look like I have frosted skin when sweat dries on my face. Ick...sometimes it even burns my skin and eyes. On a positive note, I'm sure it exfoliates my skin at the same time!

Clubbed Fingernails: Due to a lack of Oxygen, most people with CF experience clubbed fingers. The nail beds and tips of the fingers are larger than what's considered normal. My pinkies and thumbs are OK so far, but my index, middle and ring fingers are clubbed...though not severely.

Barrel Chest: When people have illnesses that cause a chronic cough, they can actually change the shape of their rib cage. The rib cage takes on a more circular shape, then it's normal oval shape. This sometimes occurs in people with CF. I am pretty certain that this symptom doesn't impact me yet.

"CF Belly": I kinda made this one up... I haven't seen anything written on this topic, but I have spoken about it with several of my girlfriends with CF. That means it's definitely true! People with CF typically have difficulty keeping weight on. The CF pancreas does not digest fats. When the pancreas is deficient, it's called pancreatic insufficiency. CFer's who are PI take enzymes so that they can digest more of the foods and nutrients that they ingest. I am pancreatic sufficient. My pancreas still digests some of the fat and nutrients I take in, however not all of them. I am just not at the point yet where I need to take enzymes.

(Nope, this is not MY belly)

CF patients are encouraged to eat a lot of very high fat food. I have no problem with this part of the disease! My CF doctors have also encouraged me to keep a little layer of extra fat stored on me, since when I get sick it will melt away. Mission accomplished on that one! However, when us CF ladies get together we often feel the need to compare our CF belly's. Many of us have a similar body type, including skinnier arms and legs, along with the 4 month pregnant belly look. I'm sure the belly has to do with digestion...I don't know. I just know that no amount of crunches are going to flatten this girls CF belly :-/ I want to hear from my Cysters out there... Any of you have the "CF belly"?

A little health update. Not too much has changed in the last few weeks. I am still on the IV and nebulized Amikacin, along with the oral Zyvox and Azithromycin. My white blood cells and platelets have been behaving. I have a clinic visit next Wednesday, at which I will have my PICC pulled. No more IV's after Wednesday! Whew!

The Theory of Natural Selection

'Tis the season to give thanks. This year, more than any of my previous years on this plant, I am thankful that Darwin's Theory of Natural Selection is no longer relevant in the human species. I am just sitting here, at age 35, laughing at the whole idea of "Survival of the Fittest". Nope, no longer the truth here in 2010. Today, sometimes the broken do survive.

What does this old fogey from the 19th century know anyways? People thought the Earth was flat back then...

I am thankful that I was born in 1975, at a time when medical science started advancing at a tremendous pace. Having no siblings or cousins with CF we were asked to think about where CF may have derived from in my family. My mother had an aunt die in childhood in the 1920's or 1930's of "whooping cough" ~ likely CF before the diagnosis existed. My father had 3 siblings, Earl, Eugene and Loraine who all died before the age of 8 of either "Whooping Cough" or "Consumption" ~ also likely CF.

If I were born a century, or even 20-30 years earlier I would have no doubt died at age 2 when I had horrible pneumonia for almost the entire year. If I were spared at the age of 2, I would certainly have died at age 16 when I had a majorly debilitating case of mono. If I miraculously survived the mono, I would have likely passed when I had a horrible case of C Diff that earned me a week in the hospital and a month long recovery. If that didn't get me, I am pretty sure that the lung infections that my medical team I have been working to control over the past 2 years would take me. Yet, I am still here! I am alive and thriving and mothering and working and wiving. I am so thankful to have been given what I see as 33 "bonus years". Years that would have never been mine to have if I had been alive in the days when Darwin's Theory was the word. Much of my life has been like icing on a cake...none guaranteed or even expected.

I am really, truly a lucky girl! When I am physically knocked down by my disease, which I have been much of the time over the past 6 months, I tend to forget how lucky I am. Yet, I know that I am almost as lucky a they come. I have been allowed to live in overtime. My wish is for the next generation of CFer's, the little one's being diagnosed now, to be even more lucky than I have been. I want them to be given many more "bonus years" than those I have been given. I want CF to be something that is managed and not deadly. Even better, I want a cure!

Today I am a thankful girl! I wish you all a Happy Thanksgiving! Count your many blessings...even if only for today.

Clinic Visit ~ The Good & The Bad

I just got back from clinic. Do you want the good news or the bad news first? I'll go with the bad, so we can end on a positive note...

I got the H-Flu...AKA Haemophilus Influenzae. Yep, I cultured a new bug. This one is often seen in conjunction with meningitis. This is baffling to me since I have been on IV's for nearly 8 of the last 10 weeks. I know that having a depleted immune system makes me more susceptible to picking up new bugs, but I just imagined that being on 4 antibiotics would protect me. I guess that's not how it works :-/ Dr. Dazzle explained that H-Flu is often resistant to Cifoxitin, so that's why it still grew when I was on the IV's in Sept/Oct. This IV Amikacin that I started 2 weeks ago should suppress the H-flu. Dr. Dazzle is not at all worried, so I'm not going to worry either. This is another one of those bugs that will never go away. Instead we will work to keep it under control to avoid lung damage. So now, here's what the insides of my lungs look like...

H-Flu

Mycobacterium Abssessus

Staph

These are my enemies! It's a little frustrating to have new bugs to manage. It likely will make it a little more difficult in the future to figure out which bug is the culprit when I have an exacerbation.

In my last post I shamelessly bragged about how much energy I had, even though my blood counts were low. I forgot to knock on wood while writing that post. That energy evaporated on Sunday. On Monday I took a 6 hour nap, yesterday I took a 4 hour nap, and today I had a tremendously difficult time getting up and out the door to my clinic appointment. I have been tired when I wake up in the morning and no amount of napping replenishes my energy. I was relieved to hear that my counts have jumped a bit and are back to being low/normal. I was also relieved to hear Dr. Dazzle say that extreme fatigue is one of the main side effects of IV Amikacin. He compared it to the fatigue that cancer patients experience while undergoing chemotherapy. I know it's not a great symptom, but it was great to hear that this is normal. I no longer feel like a lazy slob. I feel like I can now give myself permission to rest when I need, knowing that no amount of fighting against it is going to take it away. So sleep I will do...

I brought up my hearing issues and Dr. Dazzle is scheduling another complete work-up from audiology. We'll see if my hearing has been compromised and if so, in what ways. I wouldn't be surprised if I've sacrificed a bit of the hearing in my right ear for the sake of this treatment.

That brings us to the great news! I blew AMAZING PFT's! I haven't had PFT's this high since 2005, prior to having my son. They were 3% higher than last time, which was 4% higher than my baseline. Basically, I'm 7% better than my baseline on my FEV1. Good stuff! I never share my PFT #'s on my blog...just a choice I made when I started blogging. Yet, believe me when I say that they were good :-)

I gotta go take a nap now. G'night all!

Can You Hear Me Now?

I have had an amazing amount of energy this week and I'm not complaining. I got a call from my nurse on Friday saying that my blood counts are all out of whack again. Not surprisingly, my Hemoglobin was normal, hence the energy. However, my white count dropped back to 2. If they get to 1, which they probably are by now, I must give myself another Neupogen shot. My platelets are also giving me a run for my money right now. A normal platelet count is between 150,o00 and 300,000. Mine were 63,000 on Thursday when I had my last blood draw. My bone marrow better stop being lazy.

The other thing that I've noticed is that the hearing in my right ear feels different. It's a strange sensation. Twice this past week I have been stopped in my tracks from REALLY loud ringing in my right ear. It was so unpleasant that my immediate reaction was to grab my ear and shake my head until it stopped. It only lasted about 20 seconds, but it is making me a bit paranoid. Hearing loss is the biggest concern while I'm on this IV Amikacin. I feel like I am still able to hear well, though.

So I have a clinic visit on Thursday and I have some questions for Dr. Dazzle...surprise, surprise! I have 4 weeks left that I need to get in on these IV's. Will we continue this dance if my counts continue bouncing around? Could this turn into some type of permanent bone marrow condition? Is the ringing in my ears OK if it is only occasional? Could this become permanent?

I have been thankful for the burst of energy I had this past week! I had tons of fun. I kissed a camel named Charlie, I went out with my girlfriends, we refinanced the house and I finished my Christmas shopping. Life is Grand!

Minor Annoyances

This week has been full of what I would call minor annoyances. I am very thankful that I was able to be released from the hospital last Wednesday. I had meals prepared and sent over from caring friends much of the week. I am tolerating the IV Amikacin wonderfully. I am just to the point where I think I'm done with the inconveniences associated with treating this stupid disease.

Annoyance #1 - Time Management
The progression of my CF has not changed the fact that I lead a busy life and stuff has got to get done. I really have no excuse when I am tolerating my medications and feeling relatively OK. Every day I have to meticulously plan my day to ensure that I get all 3 1/2 - 4 hours of my treatments in each day. I had a busy weekend with the family and fitting everything in was very tough. It was not impossible, just frustrating. There have been many times where I just can't fit everything in and I don't get done all that I wanted. I always end up having to give up something I love, like working out :-( I have been able to get to my workout class 3 times in the past 5 days, though. I just have to work extra hard and plan my time well so I can get there.

Annoyance #2 - Surveys/Letters from Insurance Companies
With 4 hospital stays and 2 ER visits in the past 4 months I have gotten MANY quality assurance surveys from these hospitals. To be honest, I have no idea which survey goes with which stay. I feel obligated to fill these out, so they sit in my pile of things I need to do...but they never make it to the top of the priority list for reasons such as "Annoyance #1". I also keep getting daily letters from my insurance company saying I have been approved for this or I have to use a different pharmacy for that. I am a Social Worker. It's my JOB to help people navigate their insurance plans, but when I think about the hoops I have to jump through it boggles my mind. The amount of information is overwhelming!

Today was the kicker... I got a form letter that said that I was "approved for home care or hospice services". I wish my insurance company would send me a survey like the one's I get from the hospitals. I would tell them where to shove their form letters. Couldn't they have one letter that goes to those who have been approved for home care and a second for people approved for hospice? It would have been nice if they could have even just circled, underlined or bolded the home care selection. Do they know something I don't? So either I am able to have a nurse come to the house twice a week to monitor my care or I have six months or less left to live! Crazy form letters...

Annoyance #3 - PICC lines
Yes, they are super, duper convenient. However, I am a nervous wreck with mine now, since my last one ended up infected. This one has been very sore and itchy so far. I think the adjustment that had to be done, the bleeding that caused and the 20 minutes of pressure to the PICC site as a result created one sore arm. I think it's itchy, because even though I've had a PICC most of the past 4 months, I have not yet mastered the art of keeping the site dry in the shower. Saran wrap does not work, nor does saran wrap taped into place with medical tape. I spend 15 minutes prior to every shower trying to wrap my arm myself, cursing at the saran wrap as it sticks to everything possible, except my arm. Yet, I still end up with a wet dressing. Grr. One day I will master this art.

Here is a HUGE don't for all my CF friends with PICC lines out there. If you have an extension, say like a 14 inch extension, and you finish your antibiotics leaving the extension dangling when you run to the bathroom...DO NOT allow your PICC extension to fall into the toilet. I'm not saying I did or anything, but I would suggest that you DON'T. If you do I would suggest running, not walking, to your supplies and immediately changing your cap and extension line! I mean, this sounds like it would be a good plan if it were to ever happen to anyone... Not me, of course.

Basically, I'm doing very well on this drug. My counts came back up with a jolt of Neupogen last week. I have some energy that I didn't seem to have on the other IV antibiotics I was on prior to this one. My hearing and vision seem to be OK so far, although I know that I may not notice those changes immediately. My cough it non-existent at this point. All good stuff! Even with these "annoyances" I really can't complain :-)

Events of Day #2

This is my 50th blog post! Holy moly, I must have an awful lot to say...

So today wasn't horrible, but there were a couple of little surprises thrown in. First, I found out that my white blood count is back down to 1. I have 280 neutrophils. Basically, this is no where near enough. My body is not equipped to fight off ANY infection right now. I am neutropenic. The only puzzling thing this time around is that we don't really know why. Two weeks ago when my white count was depleted we knew it was the Cifoxitin. I went off of it at the time, took Neupogen shots, my counts recovered and all was right with the world. This time the only thing we are thinking is that the Zyvox must have caused this drop. This is not a common side effect of Zyvox, but it appears that I always get all of the fun side effects...so why not? So it's back on Neupogen for me. I will do 3 shots this week, get my blood draw twice a week, and continue with Neupogen as needed. The cruddy part is that I need to try to stay on the Zyvox for a full year. I've only been on it for 2 months. We'll see how long we can go along like this, but eventually, we may have to discontinue :-(

The second fun occurrence of the day was that the PICC team came in a few hours ago to tell me that they took another look at my Xray following my PICC placement and they realized that the line was too short. It wasn't far enough into my Superior Vena Cava. Therefore, I had to have an adjustment. Since they just needed to replace the line inside, not create a whole new hole, I turned down the drugs they offered me to take the edge off. Here's my advice! If you take anything away from this post, please let it be this. ALWAYS TAKE THE DRUGS THEY OFFER YOU TO "TAKE THE EDGE OFF". Oh my, the "adjustment" was not such a comfortable process. Nope, not at all. I sucked it up and didn't let it show, but I was in some pain :-/ I love the PICC nurses, though, so they made it more tolerable.

I am tolerating the IV Amikacin well and I think I'm still set to head home tomorrow so I can do all of this stuff for myself for the next 6 weeks. Yeah for home!!!

A "High" Hello from the Hospital

A little "high" hello from the hospital...

Not nearly as bad as "David After Dentist"!

Sweet Dreams? (Warning ~ Gross Pics)

It looks like my admit is a go for tomorrow. So while you are dreaming about ghosts, goblins and mini Snickers bars tonight...I will be dreaming about this...

These are pictures from my last PICC placement in September...

Yep, I'm getting another PICC. Since I need at least 6 more weeks of IV's and my last PICC got infected, I've got to go through this procedure again. While a port would be nice, my doctors think that once I eradicate this MA I will not need IV's enough in the near future to warrant a port. So another PICC it will be. I have NO idea why this procedure makes me so anxious? Maybe because it took three sticks to get it right the last time? I have had organs removed (gall bladder/appendix), I have had bronchs, I have been poked/prodded...heck I've even had two babies. Yet, no procedure makes me more nervous than this one. Once it's placed it's no big deal at all. It's just this tiny little 30 minute procedure that gives me chills. I'm not to the point where I need conscious sedation (Versed) yet. However, thank goodness for heavy doses of Xanax!

Preparing for Admit #4 in 4 Months...

I'm getting really good at this... I am being admitted to the hospital on Monday (if there is a bed available) for three days to get my PICC placed and start on my 4th IV antibiotic in as many months. This will be 4 hospital admissions, 4 different IV antibiotics and 3 PICC lines...all in 4 months time. What a whirlwind. Throw in my 2 ER visits and I think I've made it onto some type of shit list with my insurance company.

I had an appointment with Dr. Dazzle and the team today. They were able to find 68 doses of IV Amikacin in Texas! The place in Texas will ship these to me weekly and my home care company will just come a couple times a week to do blood work and dressing changes. I'm excited that we now have what I need and I can get started on this last phase of IV's. I just want to get this part of the treatment plan over with. I'm ready to move on with my Mycobacterium Absessuss being history...until it rears it's ugly head sometime in the future. Hopefully, really, really far in the future!

Drug Shortages are Infuriating

It is going on the third month that I have been dealing with the effects of the Amikacin drug shortage in the US. As a result I spent 4 weeks trying and failing both 2nd and 3rd line IV antibiotics for the treatment of my Mycobacterium Absessuss. The national media has finally picked up on this story. Here's an article my friend Marci posted on Facebook earlier today.

http://www.msnbc.msn.com/id/39798646/ns/health-health_care

I am one of the people whose treatment is dependent on drugs we have no way to obtain. My hospital did receive a shipment last week. The first shipment they have received of Amikacin in many months. However, we haven't been able to find a way to get the medication to the Home Care company to administer to me. People WILL die as a result of these shortages. People's cancer will not go into remission or they will relapse. People with MA will sustain permanent lung damage. The article reports that a couple of patients already died as a result of a morphine shortage.

I really don't want to get political, but I have been living this for several months and it's infuriating! We are supposed to have the best health care system in the world... However, these drugs, which are all very cheap to consumers, are not being produced, because there is not enough of an incentive for the drug companies. These drugs don't make the companies enough money to be a priority. This is rationing of care. Unfortunately, our system based on profit has decided that my care is OK to ration.

Fun While Waiting!

Things have been going pretty well here. I have to say that it took me about 6 days after the IV's were discontinued and my PICC was pulled before I started have ANY energy at all. I had never felt this type of fatigue before. My cancer patients at work have talked to me about it all of the time, when the chemo depletes their entire immune systems. It is a fatigue deep down in your bones. It's not that your tired...it's that your body won't perform no matter how hard you will it to. I had no white blood cell count, no immune system and definitely no energy. I experienced bone pain, which was my bone marrow trying hard to restore my blood to normal. It was a bit scary and something I hope I never have to experience again. It also made me appreciate the symptoms that my patients have described to me on a whole different level! In the end, I was glad that the decision was made to pull my PICC and stop the IV Cifoxitin. Even though it means I will be starting over with a new PICC and 4-8 weeks of IV Amikacin soon.

So I have been feeling well, still tired, but OK overall, for the past 5 days. We've been making the most of this little "IV vacation"! Crazy to say that, since I am still on 3 antibiotics, one anti-fungal, a probiotic, a bunch of vitamins, Singulair and nebulized albuterol. However, the IV's are just so intense, that any break from them is reason to celebrate.

We had a blast at my dear friend Elizabeth's Halloween Party on Saturday!

My little guy, Jake, won for the scariest costume in the kids costume contest!

Tonight we went trick-or-treating at my grandmothers nursing home. I made Jake cute, not scary. He passed out in the car before we even started.

Oh, the weekend was great for other reasons too! It was 80 degrees and sunny here in Cleveland, Ohio State won against Purdue on Saturday and the Cleveland Browns won against the New Orleans Saints on Sunday! It doesn't get much better than that!

Basically, I'm enjoying this little reprieve. I've got an appointment with Dr. Dazzle on Thursday. I have a couple little things to discuss with him...like my right eye and left ear acting funky. My sinuses are also really trying to give me trouble. I think they are confused, because they are being blasted with antibiotics. They really want to be infected, but the drugs won't let them... Fun stuff! The Amikacin that I will be starting IV has been out of stock for months. Hospitals are just starting to get it back in stock. However, the home care companies do not have access to it yet. We are working on trying to get some in the hands of a home care company that can work with me. This may take a week or two. When we get it figured out I will go to RB&C to have my PICC placed, then have my first dose on IV's in the Dialysis Center. Then I can go home the same day! No hospital stay this time...Woo Hoo!

That's all for now... Off to enjoy more IV-free days before I'm hooked up again!

The Product of Mommy Guilt...

You too could be the owner of 2 dwarf hamsters if you were lucky enough to be my children right now!
(Disclaimer: This is not our actual hamster. I swiped this photo off of the Internet. No, we are not planning on eating our hamsters!)

The guilt got the best of me. The guilt has been overwhelming. For over a month, during these intense treatments, I have probably spent nearly 75% of my time in bed. My body feels broken. I feel worthless. I think the most difficult thing has been the inability for me to carry on the roles that have made up my life for so many years. I have tried to be a good wife, a good mom, a good employee...now I feel good for, well, not much. The kicker happened last week during one of my high fevers. I was laying in bed, sleeping in fits and starts, when my kids got home from school. My daughter decided to craw into bed with me and watch TV. She stayed with me for hours. Every time I gained a bit of consciousness I found my dear little girl holding my hand, rubbing it ever so gently. So sweet...yet so wrong. It's just not supposed to work that way.

I know this will pass. At least I hope this will pass. Sometimes thoughts about possibly getting to the point where I can't maintain the life I built for myself creep in. I am just telling myself over and over that these treatments are going to make me even better able to fulfill all of my roles in life for a longer period of time. It's just going to take time. No pain, no gain...right? Hopefully, they will give me more energy when all is said and done.

This brings us back to the silly little hamsters. I mustered enough energy on Sunday afternoon to get the kids out for a couple hours. We went to Panera, which is right across from the pet store. My kids have been begging for a pet forever. The answer has always been, "We don't need another thing to take care of...we can barely take care of ourselves". The kids wanted to go to the pet store and I agreed that we could look, but that we were NOT buying anything. We walked out with two tiny little hamsters and all of the fixin's that we needed to give them a cozy little home with us. My heart just hurts for these kids right now. They seem to be doing great. Both are cruising along in school and are not having behavior issues that we have noticed. Yet, I still feel guilty that I can't be the mom they deserve right now. Hence, I bought them hamsters.

In working with kids with parents with cancer in the past, I know that having these kids work with animals is a great way for them to learn about caring for the sick loved one. Maybe they will learn a couple lessons from little "Lilly" and "Casey"? I just hope my little guy doesn't squeeze his too tight! We'll see...

Did I Do It? Was I Able to Give Myself a Shot???

Two Posts in One Night...Oh My!

Forget the previous post... It is completely null and void now. Dr. Dazzle just swung by...yes, at 9pm at night...to tell me that I have a white blood count of "0" now, do to my IV drug. I have 100 neutrophils total. Basically, I have absolutely no immune system. We are going to start Neupogen tonight, but Dr. Dazzle thinks my staying on the Cifoxitin is going to do more harm than good in the long run. I will have no PICC placed tomorrow and will likely start on about 4-8 weeks of Amikacin IV once it's available in the US again.

My, oh, my how quickly plans can change! So I'm disappointed that I failed yet another IV antibiotic. I have been on 3 and have failed all 3. Yet, Dr. Dazzle thinks the nebulized Amikacin is working well for me, so we'll stick with that and the oral antibiotics for a while until we can get a hold of the IV Amikacin. Then we'll try again and start over.

I guess I'm getting a little respite I wasn't planning on...

Being Poked and Prodded

So I arrived at the hospital today at 2:30pm feeling, let's say, like shit. I had a fever, my bones hurt, my muscles hurt, my joints hurt, even my hair hurt. Due to rooming issues I had no room available for me when I arrived. I was given a blanket (since I had the chills) and a chair and sat in the alcove in the CF unit for a little over an hour. It pretty much sucked, but I didn't really have any other options. The staff were all fantastic, though. I do love them!

I felt so much better when I got to my room, but my excitement was dashed when the IV team arrived. Peripheral IV's are not my favorite. Especially since my veins ALWAYS roll and the phlebotomists always have to dig around for minute on end until they find the pesky little bugger. Yep, it happened this time too.

I noticed this morning that I have developed a rash all over my belly and arms. This is making it a bit more clear that all of my symptoms are a result of a reaction to the Cifoxitin, and not a virus or infection. So when I saw Dr. Dazzle I used all of the charm I could muster to try to convince him that my little PICCy friend should stay. I begged, I pleaded. I batted my eyelashes...but Dr. D convinced me that this was a necessary step we had to take just to remove all possibility that I have a PICC infection. Especially, since I now have just a teeny tiny immune system. So my PICC is now gone and I am grieving it's loss :-( Really, I am...because tomorrow I have to have a new one placed in the other arm. This is probably no big deal for some CFer's, but it takes me a hefty dose of Xanax and about and hour of mental preparation to get myself to a place where I can endure the procedure without being a complete basketcase. I think it's because it took them 3 tries of sticking that gynormous needle in my arm last time before they could thread it correctly. There are some gory pictures of what I went through a month ago when getting my sorely missed PICC.... I couldn't get them to load here due to the poor connection.

So, this PICC placement procedure is what I have to prepare for again tomorrow. This is what my dreams will be made of tonight. A few people have asked why I didn't get a port. Trust me, I've asked, several times. My docs just all agree that since I haven't needed IV's often in the past, that after this cycle of IV's they don't anticipate that I'll need them again for a good long time. I hope that's true, so I'm heading their advice for now.

If my fevers, aches and general sickness continue now that we removed my PICC, we know that the Cifoxitin is the culprit. However, we are going to try to mull through the IV and treat the symptoms. If they are nearly unbearable, we will just try to get 2 more weeks of the IV's in. If they are somewhat bearable, we will try for 4 more weeks. With needing to stop sooner than anticipated, we may end up revisiting IV Amikacin in the Spring.

I guess I was just sorta wishing that my body would be kind to an antibiotic for once. I was hoping that it would have been a good hostess, showing the good guys where to go and what to do to get rid of the bad guys...maybe without attacking me in the process...

Noooooo! Not the Hole!

Yeppers, it looks like I'm being admitted again tomorrow. We CFer's often affectionately call the hospital "The Hole". Day 5 of fevers does not make Dr. Dazzle happy. I'm frustrated. This wasn't part of my plan. The fevers have continued. They are very sporadic and change quickly from low grade to pretty high. At 4pm today I was at 101.5 and felt like crud.

My blood cultures have not yet showed signs of infection. However, with such a low white blood count it may be tough to pick up an infection in me right now. I am going to mosey into the hospital tomorrow, they are going to pull my PICC and I am going to get my IV's though a peripheral IV for a day or two. Then they are going to place a new PICC, in the other arm, on Thursday. Hopefully, I'll be able to go home Thursday or Friday.

If we go along with this plan and the fevers stop, we know it was likely my PICC being a trouble-maker. If my fevers continue for a time, but go away eventually, than this is all probably a virus. If the fevers continue indefinitely, then we know that they are a side effect of the antibiotics. If that's the case, I will just have to work on managing the fevers for the next 2 months, while I'm on these IV's. That makes me a little nervous, because How will I know that I have an infection??? There's a question for Dr. D.

So this isn't all bad. At least I'm heading in feeling horrible. It will be nice to just lay back and be served for a couple days. One annoying this is that the CF floor is full...NO VACANCY! Therefore, I have to stay in the adult hospital...Boo! It's not quite as fun :-/

BLAH ~ Fevers

I'll do my best to update, but I'm still feeling a bit groggy after my adventures in the ER last night. It started Friday night when I woke up soaking from head to toe with night sweats. I never, ever get night sweats, but I figured that I must have been warmer than usual due to this bit of Indian Summer that we have had here in Cleveland lately. I never took my temp. On Saturday I went to the farm and pumpkin patch with family for a fun-filled day! I was exausted when I arrived home and, once again, experienced night sweats in the middle of the night on Saturday.

It wasn't until Sunday afternoon, when my body started feeling achy, that I thought that it might be a good idea to take my temp. That's when I discovered my low grade fever...99.4. I always run low (in the 97's), so this was a legitimate fever. I checked my temp several more times during the day and the fever seemed to come and go. It's a very fickle little bugger.

So last night, after freezing my butt off all night and sleeping very little, I finally got up at 2am when the sweats started, to take my temp. It was 100.4. Not super alarming, but I immediately googled the PICC line procedures, knowing that fevers were of concern. In HUGE bold letters on the page I found it said that you must procede to the nearest emergency room immediately if you have a fever over 100. Ugh! All CF patients and CF momma's know that ER's are a huge waist of time for us. The staff don't typically understand our disease or needs. I called the pulminologist on call and made my best effort in convincing her that I really didn't need to go to the ER. It didn't work...so off to that germ-filled place I went...knowing that my job would be more educating them about what I needed them to do, then actually getting any information from them.

So Dr. NoPersonality walked in when I got to my room. He asked me what drugs I was on. When I told him about the 3 grams of Cifoxitin his eyes popped out of his head and he asked if I was sure that wasn't an error. I bought my next dose of IV's with me, so I pulled out the container and showed him the dosage information. By the way, all experienced CFer's know tha you need to bring your own drugs to the ER. Dr. NoPersonality then mumbled that he has never seen anyone on that high of a dose of IV Cefoxitin for this extended period of time. It was as if he was questioning my treatment plan. This guy, that I had to spell "Mycobacterium Abssessus" for was trying to make a judgement about my coarse of treatment. Maybe if he had a personality I would have thought this was just general conversation, but instead it came out more as judgement.

I proceeded to tell him that I needed labs and blood cultures drawn. I had to explain that I have a boarderline low white blood count, but that the cifoxitin has the potential to make this even lower. A normal white blood count is 4-11. If my white count is around 6 ot 7, that probably means I have a raging infection. So they drew blood cultures from the PICC and from a periferal vien so they could see if there is an infection in the line only or in the line and the blood. The blood cultures will take a day or two to grow, but the CBC showed that my white count is now 2. I am officially neutropenic and immuno-compromised. When is gets to 1.5 we start neupogen shots. I was hoping this wouldn't happen so quickly. There is a possiblilty it can bounce back, but it was frustrating to hear that it is at this point now. This does not mean that I don't have an infection, however.

They let me go around 6am and I followed up with Dr. Dazzle today. The ER doctor was absolutely convinced that I have a PICC infection, and that I need to get my line pulled ASAP. I'm not entirely convinced. I have little kids that are swarming with germs around me at all times. I think I probably have a virus. It makes more sense to me, since the boat load of antibiotics I'm on should really kill any infection I might get. Dr. Dazzle agrees with me. So, the plan is that we are going to wait for the blood culture results to come back. If my line is infected I will be admitted into the hospital, have my line pulled, get my IV's through a periferal IV for one day, then get a new PICC placed the next day. Oh, joy! How I love having PICC's place. Otherwise, I'm just going to ride out the fever...calling if it gets worse. If the fever does still last a few more days, I will get the PICC pulled anyway and go with the plan to have a new one placed. The fever has broken now, but I still feel like crud...fatiuge, muscle aches, etc... I'm just laying low for now.

CF is always an adventure!

The Good News!

I had an appointment with Dr. Dazzle last Thursday. I was nervous about my PFT's. I have been REALLY junky since starting the Albuterol/Amikacin nebulizer treatments. My lungies are not used to nebulized treatments. I thought for sure this was a bad sign that I wasn't improving. Especially since I'm on enough antibiotics to keep a village infection-free. I was wondering where this junk was coming from. Well, it turns out it must have been hanging around for a while and it's finally working it's way out.

For those of you without knowledge about CF, it's as if my lungs are constantly infected with pneumonia and bronchitis. All of that infection clogs and scars the airways. Basically, mine are beginning to unclog! My FEV1 (large airways) increased by 4%, while my FEC (small airways) increased by 7%. It may not sound like a lot, but it's HUGE! I actually feel like this intense treatment plan is doing some good! I feel like I made the right choice by moving forward with the treatment now! It has given me even more motivation than I had before.

I'm still chugging along with my IV's. I've screwed up a couple times, gave myself double heparin or forgot to clamp when done, but I'm not dead yet, so the mistakes must have not been too major. I did however, freak Dr. D out a bit. I told him that my PICC got pulled out a couple centimeters during a dressing change and when the nurse turned her back I pushed it back in. Apparently, this is a no no. I actually knew it was a no no, since the nurse told me so just before I made the executive decision to push it back in. Apparently, the site still looks OK, but the real danger is sepsis. I'm not sure how I could become septic on this many antibiotics, but I'm sure it can happen. That was a week ago and I'm still doing OK, so I think the threat of infection is gone. Dr. D just made a point to reprimand me and I promised not to do it again :-/

All in all, things are going well. My bone marrow is holding up. We anticipate that it will start to fail in about 2 more weeks. At that point they are going to teach me how to give myself Neupogen shots. Nope, they can't go in my PICC. I actually have to inject them into my belly. Hey, if my cancer patients can do it, so can I! I'm thinking this would be a fun marital bonding activity, so I may actually ask my husband to give me the shots. I'm sure this is not what he had in mind when he vowed "in sickness and health"...Ha!

I've not had much motivation to open my laptop very often lately. I think that so much of my social networking world is tied to CF. Since I'm "living" CF for hours upon hours every day right now, I just think my brain needs a break. So please don't worry if you're not hearing from me much. I'm doing better than I expected!

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 :-)