I want to thank everyone for the donations coming in to the medical travel fund. I am amazed at all of the love, support and well wishes. I am so grateful to all of you. I am stunned.

This started out on the advice from a social worker to have a bake sale. Um Ok, I don't bake. Another social worker advised me to put out coffee cans at the gas stations. I started this out as " Change for a Chance" printed up fliers, taped them to cans. I went to a gas station. No body goes in gas stations nor pays cash if they do go in. What I did get was few gum wrappers and some phone numbers and a pop top. Mayo Clinic social worker sent me forms and on them was to do an online fund raiser

Your help has lifted a tremendous weight and a great deal of worry off of our shoulders. Now I can worry about the appointments instead of the" how am I getting there? "

I am still feeling under the weather but am hopeful that with a better medicine regimen that will change. The good news is... It is still warm and sunny. Warm sunny days always make everything better.

Tires rotated, oil changed, new wiper blades. Check, check and check. Now to pack and not forget the entire trunk of medical records and to quit worrying.

Many thanks and much love to all


Lori and John

http://www.youcaring.com/medical-fundraiser/change-for-a-chance/54349

Change for a Chance

http://www.youcaring.com/medical-fundraiser/change-for-a-chance/54349



  Here is a link to my online fund raiser. Everyone please share my link and help me get to the Mayo Clinic

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

Today is my deceased sons birthday. I was terribly ill with what was diagnosed pre-eclampsia, but was more than likely a pheo. He went to nicu where things went from bad to worse and I went to critical intensive care for 3 weeks. Today is a somber day for me. I miss you Mark and so wish we both would have had different outcomes.

Here is a short video from some of the best experts that I have seen explaining what I have and what it does and just how dangerous it is. http://player.vimeo.com/video/44491869 A special thank you to all of you in the video and to the pheo-para alliance and pheo-paratroopers for putting this together.

Today is going to be better. The first Killdeer has arrived and Sunday a pair of Redwing black birds showed up. Now waiting on my barn swallows and hummers. Usually early May. I am still upset over yesterday. I thought doctors were to fix us, not judge us or tell us how to live our lives. I will call and complain, but will wait until I am not so angry over it. To tell me to change my life... How do you explain to someone ( I didn't bother) that for 15 of those years I have been tearing up my shoulders and hands and neck that I was physically taking care of another person. I was given this teeny tiny baby and told to take him home and love him until he died. No time frame was given. 15 years of carrying him up a flight of steps several times a day. 15 years of lifting him in and out of bathtubs. 15 tears of transferring him from the floor to his wheelchair, to his bed. At 5 years old, that's not too bad but but from 10 to 15 that is a lot of body to care for. When he died he was almost 6 ft tall and 140 lbs. I wonder if that dr ever tried to carry a 6 ft person up a flight of steps or to try and take them out of a wheel chair because they were having a grand mal seizure. There was no sense in trying to explain what a joy owning horses are. That to be with a horse is to to get away from the mental and physical stress of my life. That to be with a horse you cant be anywhere else except in the moment, right there at that time. That a horse can transform you and give you hope and a reason to get up everyday. That sometime in 1974 an old man gave a terminally ill girl her wish and told her parents that if that girl was going to die to let her live her dreams now . That what an escape a horse is 5 years later to an abused teenager or that 20 years later a battered wife. I could not put in to words what it felt like from 1999 to now to get in a kayak and leave Youngstown, Ohio and end up next to 3 rivers stadium in Pittsburg and a army corp of engineer telling you cant be there in a kayak. Or to submit a video and try to get on survivor in 2001. To have a goal of travelling down from Lake Erie to the Gulf of Mexico in that kayak. I want to put up a web page with a gps tracker and a live video stream " Where is Lori ". That when I turn 50 I want to walk the entire Appalachian back pack rail. I want these damn drs that see wal-mart on my insurance card to know that I spent 6 1/2 years of my life juggling kids and a sick child to go to school to be a nurse. That I gave up that career because of egos like his. That all of us that work at wal-mart are human and that the vast majority of us have college educations, but the job market here sucks. How do you explain that even though you have a major illness other body parts still break down just thru wear and tear and age and that those parts still need fixed. The goal is to keep me as functional and active as possible. These parts that need fixed are painful and are disruptful to my daily living. I am right handed and can not write,type,do dishes, fold clothes, brush my teeth with out stopping and shaking out my arm. Have you ever tried to brush your teeth with your non dominant hand ? Not fun. Good medicine should be if the current dr does not know, they should pick up a phone and actually find and refer to an expert. Or use the internet and at least educate themselves. There is enough information out their that we as patients has acess to, Im sure there is much,much more that the doctors can get to.

It has been busy here for me. I finally have an appointment with a dr. to hopefully get my hernias fixed. And after hours and tons of paperwork I am getting into Mayo Clinic in Minn. on Dec 21st. The appt is set but... after reading the packet that came, appts are " typically 5 - 7 days, excluding weekends and holidays". Dec 21st is on a Friday before Christmas, I just cant see BlueCross ok ing me to be inpatient for testing. I have had all scans recently done. My appt is for 7:00 am. Now my task is to figure out how to get there. Katie says we can drive it but I am afraid of hitting snow and traffic and getting stuck somewhere on the other side of Chicago. Amtrak and Greyhound will be the same length of time. I maybe able to have some fun on the ride if I plan it out right ( I keep thinking of Dr. Lectors' special lunchbox ) As most of you know, I had my 3 rd visit to NIH in early November. I only had partial testing this time due to the amount of radiation that I have already recieved this year in previous tests. I had a new dr this trip and from the moment I stepped in the room the visit went down hill. Either my other dr did not take good notes or this one was not prepared. The new doc is at least understandable and sometimes that is half the battle in getting quality care, at least in my book. I cant do what they want if I can't understand what they are saying. Make a decision and stick to it. Not flip/ flop around. I had my usual round of lots of blood work and 24 hour urine testing. My normets levels are really high and red count is creeping back up. I wasn't set to see a hematologist this time so the blood issue needs to be addressed locally. At the time of my visit there my scans had only been glanced over and not too much had changed from my last set of scans. A week ago the dr. at NIH called me. Apparently they decided to go back and review the tests again. In April something was showing at 4. In Julys scan it was 8 and now on this scan it is a 12. The call was for me to get into a urologist as soon as I could. On the scans it looks like something is growing in my bladder. I was able to get an appt with the urologist that did last years surgery and I had a cystoscopy done on Monday. The dr. is not sure what it is yet, but Dec 12th I am going into the main U.H. hosam having problems with NIH still with all of the drs being on the same page. It seems from visit to visit what they want changes. It is either yes or no. They need to make pital to have it either biopsied or removed. Since the dr. does not know what it is I have to have it done where a full trauma team is available in case it is another pheo. That also means I need to be on the proper medication to be blocked. The dr called NIH and talked to Dr. Pacak and NIH wants samples of what ever this is. So just when I thought things where finally getting back on the right track I guess my train is taking another detour somewhere I wasn't planning on going and I am sure that whenever, whoever said " enjoy the ride " this isn't what they meant