Thursday, April 18, 2013

Some how finally spring has made it here. Today the first of the barn swallows have arrived to the barn. What a beautiful day it was today. We made it to the mid 80's. So nice to see the yard spring up and all of the trees to pop with color.
I realized the other day that I have not made a post in a while. Quite honestly, I have not been feeling well. Sleep is hard to come by and my mood is quite crabby. At the 1st of the year I made the switch from U.H hospital system over to Cleveland Clinic, in part due to my insurance plan and in hopes of getting some better medical care. I have kept one U.H Dr. that I trust only because of her honesty. When asked if she " Were in my shoes, where would she go for medical care for this illness ? " Her reply was " Mayo Clinic ."
Earlier this week I landed in the emergency room. I am still not quite sure what is going on. The new endo switched out all of my medications. Within 2 days I started to swell up, not a little but quite a bit. I called him and he switched the doses and then somehow I got really sick, fever, chills, really feeling ill. I came home with a kidney infection. While I was there, they cat scanned me. Only some of my current tumors showed up, but the right adrenal one has doubled and now they found a smallish lymph node in the lower lobe of my left lung. I won't know if it is a pheo until I go back to NIH. That is sometime in August, but due to the recent sequester, I may not get in then.
Last month my new current oncologist, as nice as he is ( although clueless with pheos) has also tried to push me off to Mayo Clinic. He wants me to enroll in a clinical trial.

Clinical trials...ummmm, ok maybe. I have had an appointment at Mayo for a while now, with the head endocrinologist Dr. William Young, supposed to be the best in the states for managing pheos. Fate has caused me to cancel several of my needed appointments with him. I now have my third time is the charm appointment on May 2nd. I need to see him, before I can even consider a clinical trial.

Clinical trials are a tricky thing for me. I am willing to try it, but nothing is not with out risks, I look at it as maybe it will work and we can kill these pesky tumors off and buy me a few more years or even better a lot of years. But with these tumors so much is unknown. If you tinker with them either with radiation or chemo, they turn ugly fast and all of those chemical goes rushing out. If I were to need medical care caused by a trial, my health insurance will not cover that care. Worse, if I die from the tumors acting up from a clinical trial drug, my life insurance will not pay, because clinical trial drugs are not standard course of care. There are 2 clinical trials on going in the states right now and I can fit into either, one is at Mayo, the other in Philadelphia . Both require me to be there 28 days on 14 days off.

Right now things are very frustrating here. I spend hours a day trying to get help. So many organizations out there are taking peoples money, but just where is that money going ??? Getting medical care needed to stay alive should not force you to be homeless. Johns employer has not had all of the over time available in the last 2 months so things are super tight.

I seem to be falling thru the cracks. I stayed at home to take care of an ill child who also fell thru the cracks. But by doing what was right to take care of Mark for 15 years is money that I did not put in to social security. Because I have private insurance thru my employer that covers some of my bills ( I have 5k deductible ) that I must first pay, but my rxs do not count towards that deductible. Because I have prescription drug coverage I am not eligible for help from the drug manufacturers patient assist programs. One medicine that I am supposed to be taking only has one company that makes it WellSpring, dibenziline, which is only used for pheochromocytomas. This drug costs 1100.00 for 30 pills, my co-pay on it is 120. I am supposed to start on Zometa to help prevent any of the spinal lymph node tumors from attaching to my spine and to slow down the degeneration of my spine. Pheos and the long term use of all of the bp meds have really depleted my bones and I need to get it under control. We have not even talked about whether it will be a covered drug or not.
John and I added up drs visits and mileage for tax time. In 2012 I had 47 drs visits and over 7500 miles going to and from those visits.
We have been asked by others " What can we do to help ? " That's is hard. Right now I need to get to the Mayo Clinic, one way or another. Right now it is looking like we will be driving. The kia needs a tune up thru the dealer to keep the warranty going, the kia really needs brakes before we go. Driving will require 2 nights in a hotel, 1 night on the way there 1 night on the way home. Universal gas cards go a long way. Toll road fare.

I am going to set up an online fund raiser to try to get some needed help. I have not set a goal yet, but did set up a pay pal account. I would like to raise enough to cover my medical travel costs and necessary medications for the rest of the year. If I reach and exceed my goal I want to put the extra to the Pheo Para Troopers to get a travel fund started there to help other patients that are having the same travel troubles. I would like to ask each and all of you if could that when I get this up and running if you can pass my story along.

Possibly later, depending on what comes out of these upcoming appointments I might like to start something a bit bigger/ grander along the lines of keeping my dreams alive when I no longer can do so by myself. But for now one day at a time one step at a time.

I hope that spring has brought warm days and bright colors to your neighborhood


Love and hugs to all of you !

Lori