Getting My Grove Back

Just a wee little update...

So, the news from last week knocked the wind out of my sails for a couple of days, but I picked myself back up and got my groove back. I can't live my life getting distraught about what a test result says...especially when I'm feeling so fine. AND, I must say, that I am feeling so, so fine!

After going off of the Zyvox I noticed a huge difference in my energy level. I actually have some energy now. Having been sick for so long, then being on a gajillion medications, I hadn't felt my typical manic levels of energy in eons. It's back and I am cherishing every little ounce of it. I know it may be fleeting...so I am making every effort to take full advantage.

I have to say, I feel a little guilty posting about feeling well for a change. So many of my fellow CF warriors are struggling right now. I have a friend in New Zealand who is picking up the pieces of her life after a devastating earthquake earlier this week. I have lots of friends right now who's lungs are bleeding, belly's are unbearably nauseous or are just recovering from hospital stays. All of this suffering, while I feel, dare I say it...healthy. There's a little bit of that survivors guilt creeping in again :-/

In other news, I started the Spireva phase 3 clinical trial yesterday. I did the phase 2 a little over a year ago, but didn't see much change in my health since I was in the midst of fighting off all of these bugs that I didn't even know I had yet. Yesterday I was at clinic for 6 hours. We did a pre-dosing PFT, then 4 post-dose PFT's. Once every hour for four hours. Here's the cool thing...my pulmonary function increased by 5% from my first PFT to the last!

Spireva is currently FDA approved for patients with COPD. Some CF patients currently take it off label. This study is intended to allow it to be used more liberally with CF patients. So far so good! I've had no side effect and my lungs feel fabulous! The plan is that I will be on the drug in the trial for 12 weeks, then I will go on it off label for up to 9 months longer. After that point, if I want to stay on it I will have to be prescribed it as part of my treatment plan at my expense.

We'll see where this takes us...

I want to thank all of my followers for your kind words and messages last week. Your support means more than you could ever imagine. I am convinced I have the best readers in the universe!

Guess I'm Not One of "Those" People

When Dr. Dazzle and I first began our discussions about eradicating the mycobacterium abscessus, he told me of these people who have been diagnosed with this nasty bacteria...who received treatment...and who never cultured it again. They were able to basically render the abscessus dormant. I knew that this particular bug is difficult to treat. I knew that this bug can cause irreparable lung damage. I knew that the treatment itself was very risky. I decided to take the risk, because I KNEW that I was going to be one of "those" people that Dr. Dazzle told me about in our discussions. One of "those" people who would have nothing but positive results.

Today I found out that I am, in fact, not one of "those" people. The mycobacterium is back. I was able to suppress it the entire 4 months of my initial IV therapy. I finished my IV's in December. It waited less than 2 months to return. It looks like this is going to be one of those things I am just going to wrestle with for the rest of my life. Dr. Dazzle and I had a chat about it. He said that while we were hoping that it would not return, we knew it would be a possibility. For now, we are not going to change my treatment plan. We are now going to focus on treating based on symptoms. My PFT's are very stable, I'm not having fevers and I'm not having an increased cough. For now, we will just go with the flow.
After the phone call with Dr. Dazzle I joined my family in the kitchen to help my husband with dinner. I told him the treatment plan, saying that I will now be on Azithromycin and nebulized Amikacin for life. My daughter overheard this conversation and said, "You mean you'll even be on these medications when you're 96 years old?". *SILENCE* When I finally caught my breath sufficiently to respond I said, "Oh sweet pea, yes, hopefully I'll still be doing these medications when I'm 96 years old". Moments like these are the worst part of this damn disease...

So I'm not going to lie...I'm bummed. I feel like I put a lot of blood, sweat and tears into this treatment plan for the past 6 months, and we're right back where we started. Dr. Dazzle assures me that just because it's present, doesn't mean we didn't suppress it. This must be what it feels like to relapse from cancer. I not a big fan of this type of disappointment.

All that being said, I feel pretty good physically. That's a HUGE plus! I also have a lot to distract me from thinking too much about this crappy news. I think I'll go get myself a mani/pedi sometime this week...then all will be right with the world :-)

Clinic Update # Gajillion

I had clinic again today. No surprises meant I left a happy girl. My PFT's were stable and now that I'm on Doxy I feel pretty good. Just a little fatigued here and there, along with intermittent belly pain, but that's to be expected when on 4 antibiotics. The only thing left is waiting the few days for the culture results to come back...

One thing that I have been experiencing lately is peripheral neuropathy. This can be a side effect of long term Zyvox use. Basically, neuropathy is nerve damage that can be permanent, that is sometimes caused by medication toxicity. This is manifesting itself in me by causing intense tingling in my hands. It feels like they're asleep, but no amount of moving them around takes the sensation away. Each episode that I've had has lasted from a couple minutes to an hour, and it most often occurs in me at night. Honestly, at this point it's just annoying. Not painful at all. However, neuropathy can get very severe. It can cause debilitating pain or lead to the loss of all feeling in the hands or feet. I was supposed to have 7 months left on the Zyvox. It is a very important component in abscessus treatment. However, Dr. Dazzle wants me to discontinue the drug immediately. He thinks the danger of having to deal with permanent nerve damage outweighs the benefits that I am getting from the drug right now. Some studies in South Korea show that abscessus can be treated sucessfully with Doxycycine, Amikacin and Azithromycin, so this will be my new plan. I tolerate the Doxy well, even though it makes it torturous to be in the sun. Guess I'll have to try to be a hermit again this summer :-/

I also signed my consents for a new study I will be starting on Monday. What's adding one more drug to the mix after all? I will be doing a double-blind Spireva study. I did a Spireva study a little over a year ago, but it was just testing the reactions of CF patients to the medication. This time they are looking for evidence that the drug can improve lung function. I have 2/3 chance of getting the drug versus the placebo. This is probably the 40th study I have participated in since childhood...no joke... I am the study queen!

So all in all it was a great appointment! Now, I'm just keeping my tingly fingers crossed that my cultures show that I have no new lung inhabitants...

Is it all about the attitude?

I struggle with the notion that the only way to get through a devastating illness is through "Positive Attitude". I hear it all of the time from people, both those with illness and those who have never been sick a day in their lives. I have come to the conclusion that people often say this to protect themselves from having to deal with my emotions. Once I hear that "I've got to be positive" from someone, I will never be honest about my feelings with this person. They would see it as a failure. This person truly thinks that having emotions such as fear, anger and sadness are weaknesses. I have talked to so many cancer patients who have felt guilt for having feelings other than happiness/thankfulness and pressure to maintain a facade of positivity.

I sometimes feel this struggle when in public. Why share my burdens with others? However, within myself I have come to the conclusion that all of my feelings about my journey are OK. I am doing the best I can each and every day. I get sad...I get pissed off...I worry more than I should...I feel deep joy...I am appreciative... I feel such a range of emotions and all of them are acceptable. Maybe not acceptable to the eternal optimist, but acceptable to me.

I do, however, feel that being happy and enjoying life important. I think I am a generally positive person, if only because it's more fun to live life this way. Yet, I make room for other feelings too. I also try to never tell anyone else how they should feel.

The link below expresses how I feel about this topic... please take the time to read!

Positive Thinking vs. Realistic Thinking