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...