Link to my Go Fund Me Campaign

If you'd like to donate to my Go Fund Me campaign, just click the image below. If you can't or don't want to donate, I totally understand. But if you would please share the image below with your friends, family and anyone you know it would mean a great deal to me. Thank you!


Until Next Time
Joyce

We Have an Appointment FINALLY!

Yes, it's taken a long time to post again but I really haven't had a lot to post other than the nasty symptoms of this cancer.

But last week that all changed! I finally have an appointment with one of the top 5 doctors in the WORLD that treat this type of Cancer specifically.  WOOHOO!. He is located in Iowa and he will start with more tests and bloodwork and possibly some other things. I have been so anxious since finding out that I have been sick almost everyday other than from the Cancer. 

My best friend from high school wrote up a Go Fund Me page because the cost of treatment, travel, and every day expenses is going to astronomical but without seeing this doctor my life span is about 3-5 years. I need longer to live! I want longer to live!!  So I'm posting my link to the GoFundMe Page she set up and hope that anyone that visits this blog and reads this will consider donating - any amount helps! I will be eternally grateful to anyone for donating. And if you can't donate, could you please click on the photo and go to the bottom of the page and get the link and share that with everyone you know (and don't know even).  

Til Next Time.
Joyce


https://www.gofundme.com/22nu3rf8

3 Months Later...

It's been 3 months since I last posted - well not quite but almost. I made it thru the holidays, albeit a LOT of stress. And it was one of the worst Christmas's I can remember in a long time. It was my year to host it, and I just couldn't.  Too sick, too weak, too everything. So my niece graciously took my place.  Which I so appreciated but I had all these great plans that came to nothing.

I've learned a lot more about Carcinoid/NET Cancer since my last post. None good - but being sick for so long, nothing seems to get to me at least. We are hoping to see one of the top 5 specialists that only treats Carcinoid/NET patients. He's based in Iowa, which is a doable drive from here, he comes highly recommended and we are fixing to talk to his office this coming Monday.

In the meantime, my best friend in the world, who I've known for over 35 years, has written up a Fund Me Now article. I'm just waiting for the right time to post it - I guess now is probably as good a time as any since once we go to Iowa there won't be a paycheck coming in. The thing that scares me more than dying is losing everything Mike and I have worked so hard for all of our lives. The cost to treat this Cancer (and it isn't even curable) is astronomical and face it, who has that kind of money anymore??? or ever did? and then to end up dying anyway? 

I can tell that I'm getting sicker. If we do something one day, I'm bed the whole next week and sleep like I'm in a coma. I'm no longer able to eat some of my favorite foods, my balance is terrible (I finally bought a 4 footed cane) and I've noticed the dizzy spells are back. 

Oh and the other lucky thing is my Vit D and Vit B12 levels are really dangerously low.  But from what I've learned that is normal for this type of cancer. 

I'm anxious to go to Iowa so see what the Dr has to say before I make up mind as what course I'm going to take. Plus I've joined a really good FB Group for this type of cancer. Very caring, very open, and very good at answering questions, which I have tons of still.

So with that, I'm going to call it a night. I'll try to catch up more often.

Til Next Time.
Joyce

Cancer and the Holidays

Since it appears there are no viewers of my blog, I may as well just unload what's on my mind and use it as a diary where I can vent. And believe me - venting is needed if you have any illness, but especially if you have Cancer and it's the Holidays. 

The one thing I keep getting told is to lower my stress level. Thank you doctors - don't you think I would if I could?! Here's how November and Thanksgiving went. I found out that my dad's pacemaker had quit working (again) and he had to have heart surgery (again) but it had to be postponed due to the fact that they didn't think he would make it thru the surgery since he was so weak. Then if that wasn't enough,  a week before the scheduled surgery for his pacemaker, mom calls to tell me dad has had a mini stroke! This was all before Thanksgiving and he is still having major problems (just not with his heart thank god). With everything going on, trying to help them from almost 2000 miles away, I decided to take a break from my doctors.  Mike and I talked about it and decided to wait until the New Year to try to find a better doctor for me and decided where and what to do from that point. 

Meanwhile after some extensive research I have learned the VERY BEST doctors for Carcinoid Cancer are in of 3 places: New Your City, Los Angeles and New Orleans. GREAT!!! We don't have that kind of money and we don't know anyone in any of those places. Heck, after 10 years of dr bills, drugs, tests and now more of the same - we are pretty much BROKE! So now we have to figure out what our next step is. Maybe a Fund Me Now account? Maybe just letting God take it in his hands? I don't know and I'm just so scared and confused and this is about the only place I can write these thoughts because if I say it to Mike he gets mad, talking to my mom makes her cry and I don't have any friends close enough to talk to about this. I don't know if there are any support groups in the area for Carcinoid Cancer but that might be another option to consider.

So that's where we are as of Dec 29, 2015.....and I was Diagnosed July 1, 2015. Pretty sad in my opinion. I'm left holding the rope and haven't a clue. Shouldn't the dr's be helping me figure all this out??????

Now that I've vented I feel a little better. Sorry but there will be more venting in the future I'm sure. If I'm not back in a few days I'd like to wish everyone A HAPPY AND HEALTH NEW YEAR!!!!

Until Next Time~

Joyce

Holiday Season and Breakdowns

So over the past few weeks I've been having little mini breakdowns, which usually  ends in tears.  I know a lot of it is the Cancer but a lot of it also due to the time of year.  I don't know why, but every year I get really depressed around the beginning of the holidays. This year is no different except I feel that my emotions are on overload. This was supposed to be our year to host the family Christmas but it's become way too obvious that I just cannot physically do it.  And I'm so disappointed about it - I was looking forward to have a "vintage" Christmas, complete with a vintage style dress and the works. We decorate our house with vintage Christmas decorations and trees and I have been looking forward to this since last Christmas. One, to show off our house and two, because it could be my last Christmas or my last time I could hostess it. As it turns out that can't even happen. If I'm up one day up doing something then I end up in bed, sick, unable to eat, with major headaches and whatever else decides to rear it's ugly head for at least 3 or more days. And to make matters worse my weight keeps going up and down and up and down so the Vintage Style dress I ordered for Christmas made me look like a Thanksgiving Day Helium Balloon. Yes, it going back! I think that was the final straw for the camel's back. It made realize I just CAN NOT do this. We're going to call my doctor tomorrow. I was planning on waiting until the 1st of the year to start treating this Cancer but now we're wondering if we should start now, holidays or not. 

I'll probably be "crying" on here more often than not in the next couple months. I've noticed that whenever I call my mom, she ends up crying about my having Cancer, even tho she says she's not. So I am trying so hard to not "cry" on her shoulder. And she has enough on her plate these days because my dad has been really sick and still isn't well.

And Mike just closes up - he does not deal with emotional issues well at all. And all of this leads me to more crying jags because I have all this emotion and pain and no one to talk to. And then the Bitch in me comes out because I just need to get it all off from my chest. I can see this is going to get much worse before it gets better.  I seem to handle it all better when I have someone else's problems to focus on. Not that I'm wishing anyone ill wishes.  So I hope y'all will bear with me thru my trials and tribulations of the upcoming holidays. 

CANCER SUCKS!! 

Remember, If you Don't Suspect It, You Can't Detect It!
Joyce

A New Post - FINALLY!

PLEASE REMEMBER THAT NOVEMBER IS...

CARCINOID CANCER

AWARENESS MONTH

I apologize for the lack of posts during the past couple of months. Living with Cancer changes everything about your life... sleeping, eating, doctor appointments, you name it.  I didn't post in September because I really had nothing new to report. I was STILL trying to get into a good doctor that had knowledge of Carcinoid Cancer plus trying to get my insurance to approve me to see one.  As it finally turned out, with the help of our family friend who is in the Medical Field, we FINALLY got an appointment at Northwestern in Chicago. We had heard so many great things about their Cancer Center, that my husband and I were ecstatic - the drive would only be 2 hours each way so we wouldn't have to find someplace to stay out of state, etc. My doctors here in MI sent all of my records and paperwork to their Cancer Center and that's where it went to hell in a hurry. 

The Cancer Center at Northwestern decided I should see a GI doctor instead (why they still have not explained). When we got there, Dr Chang looked fresh out of Med School, was totally by the book, and when my 15 minutes were up, he was done. He does NOT believe I have Carcinoid Cancer, even tho he admitted he knows nothing about it. His best remark at my appointment was "some people just have things wrong with them that have to learn to live with" and that I have IBS!!! And he got all of this out of talking over my husband and I during that 15 minutes because the Cancer Center had not sent my records over to him and he had NOTHING to go by for his diagnosis! They knew we had to drive 2 hours there and 2 hours back - so either they should have had the Cancer Center fax over my paperwork or rescheduled my appointment until they did have it.  And of course it had to be one of my bad mornings where I was so sick all the way there. But the real kicker was at the end - he sent his nurse in to get releases resigned etc, and when we were walking down the hall, but not out of the patient area, he finally came out of hiding in his office to whine to his nurse about how he just hates these type of cases. REALLY?! Could he have been any more unprofessional?!

And my husband is still trying to find out why the Cancer Center at Northwestern sent me to a GI Doctor at all since my GI Doctor was the one referring me. I should have been sent to either the Cancer Center itself or to an Endocrinologist.at Northwestern. 

So basically besides the horrendous doctor appointment that took us forever to get, the only other news on my Cancer is new symptoms showing up here and there. I am really starting to consider going to a specialist overseas if something isn't done soon. 

I'll update you more in my next post, but right now my pain meds are kicking in so I'll be dozing off soon.

Remember, If you Don't Suspect It, You Can't Detect It!
Joyce

All The Red Tape and Hoops You Have to Jump Through!

Well, if it wasn't for all the red tape with my insurance, which by the way is supplemental in addition to my Medicare and is paid for out of pocket, and then ALSO having to have a referral from my Primary Doctor, not the Rheumatologist or Oncologist that I have been seeing for the Carcinoid Syndrome, I could already have gotten an appointment at Northwestern. The scheduling lady was nice enough to say I could pay out of pocket but that it would be in the thousands of dollars.  Sure, like we have that just laying around. And there is still no guarantee that my insurance will cover all of this because 1) it's out of my network (YA THINK!? Since only 5 states have knowledgeable physicians and Michigan isn't one of them and  2) because it's a non-curable cancer. But I'm also told not to get stressed because that isn't good for me either. PLEASE someone tell me how to not stress when I have almost 24 hrs every day to do nothing but think about this? And ObamaCare has made it even harder to get help if you have Cancer or anything else that is terminal. 

On a good note though, I took the time and contacted 2 of my cousins to let them know what is going on. I debated because I really don't want to burden anyone or have them pity me. But being cousins, I felt they had the right to know. I haven't heard from one of them yet, but I really wasn't sure I would or not.  However, I have heard from the other one and am soooo very happy about that. If you have family members you haven't talked to in a long time, or have a grudge against someone - please make up with them.  No one, not you or the other person, is guaranteed a tomorrow. 

So right now I'm home waiting to hear if Mike got a hold of my doctor for the referral and also my insurance company (he takes care of all my medical issues). I'm very anxious to see what he has to say when he gets home. It seems like for every step forward, there are 2 or 3 steps backwards.I am just praying that I can get into Northwestern soon and get started on this Cancer treatment. 

If you don't suspect, you can't detect it!
Joyce