Pheochromocytoma Journey for Skye Day 19

Skye's Pheo Journey Day 19

I popped open my eyes after waking from the same dream I have all the time. I'm having fun, then the person I'm with disappears. A daughter I lost to a ex that married a millionaire, in a heart breaking custody battle and have not talked to in more than 10yrs, called me after she talked to my oldest daughter. I've been so full of emotion talking to her, it took all I had to not cry each call. It was saddening to tell her I may have a rare cancer & that I may not survive it or I may survive. She brought me up on her life. Because of all that I've been dealing with, I haven't talked to her for a bit. I heard she talked to my step father, which I think is a bad idea, cause he doesn't talk kindly of me. I don't want her to stop calling me. But, lately I haven't been able to reach her to keep in touch with my condition. So, this is what has added to my stress and my dreams. In my dreams she looks like the photos I see of her on Facebook, where I gasp at how grown she is now. I've been writing a book of 365 Days of what I want to tell my daughters & what I want them to know about me. I've been searching the web & dream books but, I have yet to get a true interpretation for why people I love are disappearing in my dreams. I know I've been stressing over who is going to come & help me through my operation. If I could get my surgery in TX, I would go & stay with Mom or go to KY where my daughter is. But, instead I got to stay where I get my Insurance. Though medquest is across the country, you can't use it across the country, except for the emergency room. I've been talking to Scott and telling him of my woes. He feels me. He said that he never thought Matt was good for me, but he also thinks Matt looks a lot like the love of his life that died of AIDS. Him saying that, back in 2009, never sat well with me & created distance, that kept me from calling as much as I should. But, he is my best friend & I trust his opinion. So, I called my family early in the morning, knowing they are 5 hours ahead of me. My Aunt Juel and her daughter, Jill(my cousin) mentioned they would try to contact the other cousins to see if they could get a collection to send for Scott. I rather have a family member be with me, but they said they have to work. Due to my Aunt Geneva & Uncle Leigh's funeral earlier that year, no one can take off from work. Aunt Juel said she would come, but Jill feared the long flight for her Mom. I figure Scott would help, but he's never been the caring type. Understanding yes, but when it comes to caring & fix you a meal or go & get your meds, I never seen that side of him. Knowing this, makes me wonder what am I getting into.

So, after talking to my family, I got ready to support Matt at a gig he has with Stewart Cunningham. My BP so far today was 141/85, which shows the benzo meds are working. My pulse rate was high. I'm taking Phenoxybenzamine HCl 10mg; caps, one pill twice a day. I don't know if the dosage needs to be increased or not? Another question I would like to ask.
I think I could bring it down more if I get regimented in taking my meds. Stewart is a old piano player from Detroit and has played & gotten high with the best in the biz from Etta James to Henderson. I sang with Stewart at a few Street Festivals and other gigs. I meet him in 2003 on a public bus, a year after starting over in Hawaii. He wanted me to sing jazz and I would like him to play more blues. All the songs I like to sing, he wanted to sing them too. Oh, well. So, I reintroduced him to Matt, who last saw him in the 90's. I was running too late to catch the whole gig. That's ok, cause I'll hear the best part, the end. I tried to look good to feel good and took my favorite snacks to a Sunday Brunch Time Jazz Get-together at Ward Rafters. This is where I have a open mic poetry gig in another week. I wanted to make sure I went to say hi to Mrs. Ward. She is 90 now and still loves good blues and jazz. When I got there, it wasn't as crowded as some Sundays. But, it had a comfortable crowd. Matt was playing like he was at the Blue Note in NYC. When Matt plays his sax, he gives it his all. Matt lives inside the music and brings it out for us to hear, like a Jazz Commando. At the end of their last set, I got a chance to belt out one good Blues song. So, I sung "Everyday I have the Blues" by B.B.King. I told the crowd that's how I felt. So, I should sang it. It felt like a spiritual release to get the song out of me. 

During a break I talked to a woman that was a nurse from Conneticut, with friends.  Jules was here for a wedding.  Jules said, she spent alot of money to come hear & meet a nice guy that lives in Big Island that was in Honolulu with her for the wedding. I testified and told her of my pheo diagnosis and what I thought of the type of care I wasn't recieving & how I was checking out more options before it's to late for me. She said that she knew of pheo & how rare it was That surprised me, that she would know about pheochromocytoma. I gave her my biz card and told her to give me a call if she needed to know where to go while she was in town. I also told Jules to call me, if she knew of a clinic or anything that could assist me in curing my pheo.  Jules mentioned, she might call.

Now it was time to go home and take a pill & check my BP. With the boys accompanying me, made the long walk down the hill easier to take. All in all, I had a good day. I barely eat and drank a lot of water, so I wouldn't swell or have a spell. I know I needed to call the clinic in the morning to check on an appointment. The view walking down the hill is scenic and beautiful. Just looking out, makes my stress go away. Then you see all those houses and think how much it looks like L.A. After thinking that, I start wishing I was one of the other Hawaiian Islands like, Big Island or Kauai to be closer to nature. One day I will, but for now I just need to get this pheo straight and try to get more support. My journey still rambles on.


Please take the time to check out my links that I found useful in getting information on Pheochromocytoma and the research clinics I found. There may be one link for you that can help in your treatment.


Today's Youtube; http://youtu.be/8nVNf03vfw8


Here are some videos & links about Pheo & it meds.

http://www.cancer.gov/cancertopics/types/pheochromocytoma

http://www.nichd.nih.gov/health/topics/pheochrom/conditioninfo/Pages/default.aspx

http://www.youtube.com/watch?v=esv0u2AnID8

If you would like to talk about anything about Pheochromocytoma only, email me @; pheo.n.skye@gmail.com