Why Fae Has Been Absent This Week

[mfh]

fae, I am so sorry your sleep was disrupted from pain and glad you will talk to your doctor.

Your Godson and his fiance are on a journey that no 26 (or any age) should have to travel. I know your heart goes out to them as you deal with a similar batter. I am so sorry.

Will someone be stopping by today?

Peace,

Mary

[kayc]

fae, I hope you are asleep even as I write this. 26 is such a young age, I'm glad they're taking the precautions so they can have children someday, and I'm glad he is standing by her as she goes through her difficult journey. Cancer isn't for the fainthearted, that's for sure. Praying for some relief for you...

[feralfae]

Dear Ones,

Yes, Mary, karen comes every day. Friends are coming out Sunday after services to bring an Easter Egg. I am not strong enough to go out for brunch, so they are bringing a treat for me.

Presently, I am sitting here nibbling on a bite of Coconut Bliss Dark Chocolate.

One of our good friends just left a while ago, ergo the Coconut Bliss, and he made me explain my plans to him, both of us understanding that plans change. I told him I plan to rest, rest, rest and Heal, heal, heal until I see docs on the 28th. That I will have questions for all three docs, and that I am not making any big decisions until I talk to the docs. Harry, I am enlisting your help with questions. Obviously, I need to find out who has what, if any, experience with NETS cancer around this state. I think I will be headed elsewhere.

I am importuning people to come visit.

My pain meds were increased slightly today, so now I can take anadditional 325 mg every six hours if needed. I am reading a Nora roberts which is a cute story, and not at all dark so far. I don't need dark.

Jase and Katherine will be here to visit Friday, depending on the weather. I love them both so much, and I am so sorry to see them going through this. Jase is a lot like Doug, just true blue and loyal as the Sun. The two of them, Jase and Doug, were so great to watch together. Now Jase is helping Katherine through this time, one day at a time. The egg harvesting is their hope for the future when they want a family. I hate to see them going through this, but I am so glad they are going through it together. Talk about bonding!

Back for my last spoon quota of Bliss, then it is time to nap.

I have not been doing much research yet. On the 28th, they are doing blood work and a CT scan, and I then meet with the docs. I tole them I needed a place to rest and have a warm blanket between tests and appointments. I am trying to take good care of me.

I sure hope they have a bit of comprehension about what they are doing. I am sending links to all Harry's links and to Walking With Jane as well. {{{Harry}}}.

{{{Mary}}} {{{Kay}}} {{{{{{{{{Tribe}}}}}}}}}.

*<twinkles>*

fae

[kayc]

fae,

I'm glad you have Karen coming in and people coming to visit...esp. bringing you an Easter egg!

I am on day 5 of a serious allergy breakout so am going to make the 100+ mile trip to the doctor tomorrow to see if there's anything they can give me to help with the reaction. I doubled my medicine and it didn't seem to help a bit. My face & lips are burned and itching, very miserable.

[mfh]

fae, I am glad Karen is coming daily and that others dear to you are visiting...hopefully for short visits. And to come with chocolate....excellent. I am glad you are resting until closer to your doctor appointments and though I understand your desire to create a list of questions for your doctors...very important...I hope you can let that go for a few more days. I do hear you loudly and clearly that you ARE INDEED putting rest first and that you also need to be prepared for your appts. Lay low, fae, and now that the pain meds are increased hopefully get some decent uninterrupted long periods of sleep.

Peace

Mary

[MartyT]

Thanks for the hugs, fae ~ This one's for you, from all of us ♥

[HAP]

Dear Fae,

The most important link to send them is to the Carcinoid Cancer Foundation (carcinoid.org). They have the best resources for doctors and the broadest range of information--as well as the oldest reputation. There are five doctors that are quite open to talking to people: Dr. Richard Warner at Mt. Sinai in NY is the father of the field; Dr. Matt Kulke and Dr. Jennifer Chan at Dana-Farber in Boston--Jen was Jane's doctor; Dr. Eric Liu at Vanderbilt; and Dr. Gene Woltering in New Orleans at Ochsner. The last two pop into patient support groups online periodically. There are others who are in the same league, but I don't know them as well--and they strike me as a bit more distant.

My site is aimed more at patients than at oncologists and other specialists.

One of the big problems with these tumors is they don't show up well on standard CT, PET scans, and MRIs, even with contrast. Your doctors need to know that. The best chance of catching a tumor on a scan is octreoscan and Gallium-68. These are not widely available, but they are the gold standard. But even these will not snare everything.

That will give you enough to start. Now go rest some more.

Peace,

Harry

[enna]

My Internet has been down almost all day....I started a note here hours ago and lost it.

Oh Kay, I am so sorry you are having troubles with your allergies. I hear that the allergy season can be quite bad this year. I am sorry you have to go so far to see a doctor. I hope he/she can give you an allergy shot to help you.

I am trying so very hard to just stay healthy for my trip into IL in a few days. So far so good. My grands are calling me every day giving me all their love.

Fae, {{{{{{{{HUGS}}}}}}}} I know how special hugs are and I always take all I can get.

[Queeniemary]

Everyone

Harry, so glad that you have the information for Fae, and can help her to steer her physicians in the right path to those who know the most about NET cancer. I read the links that you gave to Fae, and found them most informative, and very well written. I believe your valuable information will be a great help to Fae, and to all of us. Fae, so happy you have good chocolate, and friends looking out for you. REST

Kay, so sorry about the allergies. We are having a lot of pollen here, but I am not too allergic. I take a generic over the counter allergy pill each day, and that seems to help the running nose syndrome.

All of my red bud trees are in full bloom, and my dogwoods are blooming also, later, when it warms a bit, I might walk around outside and take a few pictures to share.........and most exciting to me, my azaleas are about to bloom. I have really worked to keep these last plants alive. And they are going to be lovely.

Anne, so excited you are going on your trip to IL. I lived in Moline, IL for a number of years, when I was married to my first husband. My oldest son was born there. I worked in the administrative office for Deere and Company. You have probably already said, but where in IL are you going?

My dear friend Dana, will be going through her fifth anniversary of her 48 year old husband's death on Saturday. She has been here several times this week to talk. I am not sure how much help I am, but I consider that being with someone who "gets it" has to be of some value. We are lunching today with my cousin's widow, and another friend. Saturday she is reserving for herself, and will be spending time with Morris at his grave. She is engaged, and living with someone, but that does not take away at all from the love she had/has for Morris. So far he understands her need for alone time during this time of year.

My {{HUGS}} to everyone, we all needs big hugs every day!! Marty I loved the internet hug, so grateful for you and Mary for being there for us with words of wisdom.

Mary (Queeniemary) in Arkansas

[kayc]

I, too, appreciate the internet hug! I don't see fae here so I hope that means she's resting. I haven't had time to be on here the last couple of days.

I'm not affected (I don't think) by pollen, but got a hold of something I injested a week ago and it is NOT getting better. My face and lips are burned, red, peeling, itching, but mostly it hurts like the dickens, also have some numbness. I got a shot and some Rxs which I asked them to mail to me, the doctor was so backed up I was concerned about getting home before dark, I should get the Rxs tomorrow. My son surprised me along with his dog, Bruno, last night, I had enough notice to fix something to eat for us. We talked, ate, watched a movie and the dogs played until midnight, they had a ball! They were playing this morning too but Paul had a class in Corvallis (2 1/2 hours away) so had to leave early and Arlie cried and cried when they left. I was walking him and he tried to catch their truck, crying and crying, he was truly brokenhearted. I took him for a ride and to the park and also let him play with the neighbor's dog to restore him. Paul invited me and Arlie up for Mother's Day weekend so he'll get to play with Bruno then.

I spent all afternoon painting the ceiling, got as much on me as the ceiling! It took way longer than I'd thought it would, and equally as long cleaning everything (including me) up. Will sleep good tonight! I have to give a second coat to some of it, will wait to do that until later.