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

AND WE FINALLY HAVE A DOCTOR!!

I'm so sorry for having such a lag in between posts. I think maybe I should take back my comment about trying to post every day, and instead say I'll try to post as much as I can depending on how I feel. And as you can see from the date I posted last, I haven't felt well.

But two good things happened this weekend and I am so grateful for both. First and foremost I celebrated 34 years of marriage with Mike, my husband, soulmate and best friend. We celebrated by going to a Barn Party at a local Nature Center we belong to and had a great time.

The other GREAT thing that happened finding out I FINALLY have a doctor to see me for my cancer. Our family friend (I have mentioned him before) that is a doctor, has gotten me in to see a Dr. Robertson at Northwestern University of Chicago, in Chicago, IL.  I am beyond ecstatic!!

This doctor comes highly recommended in the field of Carcniod EVERYTHING! I found a wonder write up he did for the American Family Physicians and am including the link since it's so informative. http://www.aafp.org/afp/2006/0801/p429.html

That is about all I have because as usual on a weekend, I overdid it and am paying the price on Monday but I'm fine with that. 

Please remember - if you don't suspect it, you can't detect it!
Joyce

PS - PLEASE, PLEASE spread the word of my blog to your friends and relatives. Carcinoid Syndrome stays undetected and the life you save by sharing may be someone near and dear to you!

Glad to Be Home and In My Own Bed Again

I've been having these chest pains for a while now but really didn't give it much thought since I have really bad asthma and it's been so hot and humid here.  I wake up every day feeling like an elephant is sitting on my chest and I hack up what is similar to a hair ball almost daily. Lovely - NOT! Anyway, when I was diagnosed with the Carcinoid Syndrome, I was also told I had a heart murmur. And just a month or so before that I had been diagnosed with a Hypertrophic Left Ventricle.  Well, yesterday the heaviness would not go away and I was having chest pains on top of that all afternoon. I HATE going to the hospital but Mike insisted on taking me to the ER, where they decided to admit me for observation overnight. Now I'm sure if you've ever been in the hospital you know you get no rest at all. I was so glad when they didn't find anything and that it is just "another symptom" of the Carcinoid Syndrome and that they let me go home super early this morning, as long as I agreed to bed rest. (like I can do much else). 

I know - I still need to add the rest of the Facebook posts but it will probably be later in the week. I'm super tired and now even more behind on my Dollhouse World schedule.  

So that's the short update for today. 

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

Frustration Regarding Rare Cancers

I thought I'd post this before adding the rest of my posts from my Facebook page. So far I still haven't been able to find a doctor that is willing to take me on as a patient. Thank God for having a family friend who is highly intelligent and well connected in the medical field. He is doing his best to find one as soon as possible for me. 

In the meantime, I've been doing my own research.  Can you believe in this day and age, there are approximately only 5, yes you read that right, just 5 states that have doctors that are knowledgeable about this type of rare cancer. Thank goodness for me, one of the states is IL, which is only two hours from us. But my point on this, is that many people do not have the money or means to travel and/or stay someplace that far away if they are diagnosed with this rare cancer or any other rare cancer or any cancer for that matter. Now please don't take my next comments wrong - all cancer's deserve research.  But look at the outpouring of financial aid, support, and especially information, etc for Breast Cancer, Colon Cancer, Brain Cancer, Non-Hodgkin Lymphoma and so many others that are heard about everyday in the mainstream media.  But there are MANY cancers that are so RARE that no one has even heard of them, that doctors don't even know enough to treat those patients. Don't they deserve the same support??? Don't the people that are diagnosed with the rare cancers deserve a chance at life also? We need to bring these rare cancers to the front of the media so they can also get financial aid, money for research etc. 

You have no idea how petrifying it is to know you have this thing in you someplace, growing (albeit slowly?), your life is not the same and never will be. And yet you cannot find a doctor for help. If there is even one. Most days it seems surreal. But I think in my case it feels like that because I have been sick for so long with no answers. On the days I think about what my body is going thru, I wonder if death would actual be better than the life I am now living. Because in actuality I am not living but existing. I might feel good one day a week and even that is such a strain and I am on constant pain killers to get thru the day. The pain is constant and some days worse than others.I'm not able to do many things anymore and I've pretty much lost all the friends I had because they got tired of my not being to do things or canceling at the last minute. 

I pray I find a doctor before it's too late and I also pray that more attention and research is brought to the forefront for rare cancers like Carcinoid Syndrome and other cancers that people have never heard about.  So if you can, please help spread the word! You never know when someone you love may be the one diagnosed.

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

Finding Out What is Wrong with Me...A Diagnosis FINALLY!

This blog is about my journey after being sick for almost 10 years and finally finding out what is wrong with me. It's my personal journey with Carcinoid Syndrome.  At times I may seem "eh" and other times I will be bleeding my heart out. If you would like to follow me on this journey - and I have no idea how or when it will end - I welcome you aboard! Oh. and I should mention they will probably be profanity at times because this has already been a rough road.

I was diagnosed with Carinoid Syndrome on July 1, 2015.  It is a very RARE form of Cancer and by the time you are actually diagnosed, you have more than likely had this cancer in your body for anywhere from 6-10 years.  Which means with Carcioid Syndrome, you already have a tumor someplace in your body, and naturally if you have a tumor, your have cancer. The hardest part is finding a doctor that specializes in this rare form of cancer. To say I was in shock would be an understatement! It also didn't help that I received the call from the doctor's office while I was on the road driving to get a photo of the rare white pelicans that had been in our area. I could barely see the road from crying after that call and I'm amazed I got to where I was going. I have known for a long time that something was not right but none of the doctors I've seen (and I've seen them all!) could ever diagnose it or and many wouldn't even try.Thankfully my Neurologist had a patient years ago with the same symptoms and he referred me to a Rheumatologist that knew enough to run the correct combination of tests. He ran them on a Thursday and I got my results on the following Monday. I was immediately referred to a specialist in a different city. More on that in my next post. In the meantime, to learn more about this cancer, please visit:http://www.carcinoid.org/content/ and spread the word. If You Don't Suspect, You Can't Detect It! Joyce ...