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Posted 11/15/2014 4:01 PM (GMT 0)
As some of you may know I was feeling down and physically my health was feeling like it was deteriorating very quickly. I got really depressed and was having bad thoughts. So, I went to the hospital and they set me up at a mental stabilization unit in St. Louis. I'm doing so much better now mentally, but the physical/medical issues are still there.

I'm scheduled for another MRI and EUS/biopsy and I think another Octreotide scan. I've setup appointments with my PCP, GI and I'm going to start seeing a counselor weekly for the mental aspect of things. I'm also going to be looking into pancreatic surgeons at a couple hospitals in Chicago. The hospitals recommended to me were Rush Memorial and Northwestern Memorial in Chicago, IL.

I've got some med changes from when I was in the hospital. My anti-depressant has been switched from 40mg Celexa to 30mg Cymbalta. I'm taking bentyl 3x daily. I was having a flare-up of my GI symptoms at this same time so I'm on a course of steroid suppositories. I'm also taking prescription Zantac 150mg everyday. So, I am taking even more medications now, but I feel much better mentally and physically I am starting to feel a little better.

I'm just glad I got through this very low time I had because I was having suicidal thoughts. I am glad I went for help because it really did help.

I encourage anyone that is very depressed because of their physical illness to check into a mental stability unit for 5-7 days. They get you straightened out mentally pretty quickly.
Posted 11/15/2014 4:20 PM (GMT 0)
GREAT NEWS!!!

 

Mark, I'm beyond happy that you found some help.  I know first hand how physical suffering can lead us through the bowels of emotional hell and loss of hope...especially when doctors abandon us.  Your trip to St. Louis sounds like it may well have saved your life, on so many levels.  If you are finally getting the tests you need AND seeing surgeons who can operate on the pancreas, that's a WIN, WIN!!

I would get appointments set up as soon as possible, and not slow the momentum.  I'm questioning your "PCP and GI" though...Aren't they the ones who sent you into a death spiral?  PLEASE, MARK...while you are feeling stronger and in a better place...pursue the medical intervention with your pancreas issues.  I'm convinced that some, if not all of this can be resolved.  Is this the first biopsy of the tumors?

Keeping positive thoughts for you, your wife and son.  Better days ahead, my friend.

Hugs~~Dixie

Posted 11/15/2014 4:26 PM (GMT 0)
Well I've already got an appointment with my PCP and my GI. I'm not seeing my original GI but I'm seeing the GI I seen before that specializes specifically in IBD patients. She is over in St. Louis as well at Barnes/Washington Univ. I'm going to have the EUS/biopsy ordered by either one of the doctors, just depends on which appointment comes first. This is not my first biopsy..I have had 3 now and all have came back inconclusive.
Posted 11/15/2014 7:24 PM (GMT 0)
Sounds like you are making progress which is great! It saddened us to hear you having so little hope. Thanks for being a part of our family here on your better days as well as when you are not doing so well. We care all the time and your experience could encourage others to get help.

Looking forward to hearing what happens next.

Post Edited (Abilene) : 11/15/2014 1:46:11 PM (GMT-7)

Posted 11/15/2014 7:57 PM (GMT 0)
Such wonderful news Mark. I was stuck in a suicidal loop after I was Dxed with Cancer and my Psych Rxed me Cymbalta, same as you. It has worked wonders for seven years now so I highly recommend it. I ave found that it also helps with nerve pains as well. Keep up your spirits and health . . . Q
Posted 11/15/2014 11:10 PM (GMT 0)
Good to hear from you Mark - I'm so glad you're starting to feel a bit better, even if it's "only" the mental aspect.

Did you ever find out what happened with that ridiculous GI guy that kicked you out of his office? I wanna strangle that guy for treating you that way!
Posted 11/16/2014 2:24 AM (GMT 0)
Thanks for the support everyone! This forum has been great for me.

That original GI I think was offended by me asking for a second opinion by a different pancreatic surgeon than the one he sent me to. It was immediately after asking that that I got the boot.

But I'm not going to let someone cut on me if I don't like them as a person. The surgeon I seen was very rude and seems uninterested in helping me. He was only in the exam room for maybe 60 seconds and he was rude to me the entire time.
Posted 11/16/2014 10:17 AM (GMT 0)
I'm so glad you sought help. You honestly sound so different and yes we can see that by your writing.

Susie and constantly direct new or struggling CPers to get a therapist on board early out. Depression associated with chronic pain and health issues is almost as consistant as the pain. We suffer so many changes and losses in this journey and often times we have to do a complete remake of who we've always been and those changes at the depth don't come without a price to our mental health.

My very first therapist that specialized in CP and taught "distraction techniques " was a life saver! I have gotten through some pretty rough places pain wise over the years with it and its a automatic first response to pain for me now.

Mark sounds like you have a plan in place and can now move forward and get some much needed answers. As for the GI getting offended that's likely and they can view that as not cooperating with medical care. Working with all sorts of Dr's for so many years has taught me that for the most part they have a strange way of seeing things, surgeons that are worth their weight in salt are usually carrying that "God complex" but that doesn't mean as a patient I have to accept that what he says is Gospel!!

If you see your sliding back towards that black hole of darkness again pick up the phone and call someone, cymbalta is great but it can take awhile to reach maximum therapeutic levels and until then can carry the risk of dark thinking.

Good luck to you and keep us updated as your appointments move forward.
Posted 11/17/2014 12:39 PM (GMT 0)
Well my appointments are starting today and tomorrow for PCP and therapist. I'm looking forward to having someone to talk to about things.

Although, I am starting to get a little down again and I think it is mostly my family. It just seems like no one cares and they have given up on me, especially my wife, which makes it much worse. I know I've had a lot of issues and caused a lot of problems with my physical and mental health, but I don't feel like my wife should be giving up on me when I'm at this great point of turning things around. I feel like right now is the point that I need the most support from her and she isn't showing any love or support.

I'm just trying my best not to get so down that I don't want to live anymore because I was doing so much better when I was discharged from the hospital. Hopefully after my appointment with my therapist tomorrow things will keep getting better.
Posted 11/17/2014 12:58 PM (GMT 0)
Keep that chin up Mark your doing just fine and back sliding is fairly normal and it is also pretty normal to have those close to us pull back when they are worried or have issues with our health. I dont believe for one minute she doesnt care but fear can be a really scary thing and our self defense mechanisms say back off,bad news wont hurt as much? Just stay ontop of your game and when your at your best she will hopefully turn around. You cannot let other peoples attitude stop you from doing what is best for everyone in the end and right now getting you some answers and a plan is going to put some routine back in your life and that may take the scary out of hers.

Go to your appointments,talk to your therapist about this and stick to the plan you have.
Posted 11/17/2014 1:02 PM (GMT 0)
Thanks for the reply Vickie...That is exactly what I am planning to do. I start with a follow-up to my PCP today and then therapist tomorrow. I still need to get an order for EUS and FNA biopsy and I'm going to ask my PCP so that can be scheduled asap. I couldn't get ahold of my GI last week so hopefully today I can schedule an appointment with her. I'm just trying to stick to the plan I made while in the hospital and get it done quickly with no procrastination.
Posted 11/17/2014 2:42 PM (GMT 0)
Sending you prayers and many well wishes, keep us posted about today's appointments and when you get your biopsies scheduled.
Posted 11/17/2014 6:23 PM (GMT 0)
Mark, I hope your wife can go with you to your therapist, maybe on the 2nd visit OR maybe that therapist can suggest a different one for you to see together. You had her and yourself prepared for death, now that things have changed she may be scared to trust that it really has changed. I'd like to think that if it were me in her place I would be very loving no matter what but fear can trump many feelings. You sound determined now so keep that up and be patient with her. I expect a little time to heal this situation.
Posted 11/17/2014 6:36 PM (GMT 0)

Markh said...


That original GI I think was offended by me asking for a second opinion by a different pancreatic surgeon than the one he sent me to. It was immediately after asking that that I got the boot.
.

Well, then I'm glad he's not seeing you anymore. Any doc that's offended by someone getting a second opinion has a god complex and isn't worth seeing anyway. I'm sorry you went through what you went through with him but you're better off without him.

(((hugs)))
Posted 11/17/2014 7:09 PM (GMT 0)
Hey Mark,

Indeed.  I was going to say some of the same things.  Procrastination of any kind will change the momentum of your progression.  That's why I SO stressed upon you to "bird dog" those appointments!  Get them scheduled (YESTERDAY) and get them done.  Knowledge is POWER.  You have lingered far too long, whether through your own procrastination or your doctor's gross negligence.  Either way, those tests/procedures would have been scheduled on an emergency basis.  Yes, it CAN BE DONE if you have a doctor making the calls. 

As for your wife...cut her some slack.  I know it's tough to battle the physical and emotional torture within.  I'm there.  But I also have the perspective from a caregiver's standpoint.  That's why a therapist will be of utmost value for not only you, but your wife.  You need a professional to vent to, so that it's not a constant state of oppression in your home.  Your wife also needs some support.  Consider her view...watching you slip away in physical agony...feeling helpless to make it better.  Survival instinct kicks in, and we detach to steel ourselves for imminent grief.  Fight or flight...

 

Don't take it personal and feed into those dark feelings.  Your wife will be fine when she sees that you are fighting the good fight.  CHARGE!!!!  Self-pity is a luxury that folks like you and I cannot afford...It will lead us to a place where hemlock thrives.

Stay Strong- - -No Excuses nono

Hugs~~Dixie

Posted 11/21/2014 2:35 AM (GMT 0)
Mark...How are you? Can you give us an update on your doctor/therapist appointments this week? I'm so very hopeful that you've got the proverbial ball rolling for biopsy and surgical consult. I don't want to see you "bottom out" again. Embrace this dragon of the unknown while you have your strength to do so.

Hugs~~Dixie
Posted 11/21/2014 3:25 AM (GMT 0)
I'm keeping my spirits up. I have my first appointment with the new therapist tomorrow. Then I have an appointment with my GI doc Monday and I will have him order the EUS /w FNA biopsy of the tumors in my pancreas. I've also got a bunch of blood tests that my PCP is running so I am just waiting on the results. My blood-work is showing that my pancreas isn't functioning properly and some other things have been out of range too.

My wife is coming around slowly. I think she is just scared of being hurt like if I were to die or something...so it was like she backed off some and now that I've got everything going in the right direction very quickly after being hospitalized she is slowly showing more and more love and support everyday. I just have to have her love and support so I hope it gets better because her and my son, of course, are my entire life.
Posted 11/21/2014 3:30 AM (GMT 0)
Good news. Thanks for letting us know. I'm so very glad to hear you are making progress in several areas. Keep it going!
Posted 11/21/2014 5:52 AM (GMT 0)
Mark...Understandably your wife and son are your world.  That's why you have to get back your good health, so that y'all can live happily ever after.  As I've said before, as long as your wife sees the will to live...she will fight like a tiger for you.  But if you retreat into thoughts of suicide again...she will steel herself rather than face the possibility of losing you.

It's all going to work out, if you continue follow through with not only testing, but aggressive treatment of those tumors.  Positive thoughts.

HUGS~~Dixie

Posted 11/24/2014 6:31 PM (GMT 0)
I seen that GI that kicked me out of his office a while back. They called me and setup an appointment for this morning. As soon as he came in the room I told him I felt like he failed me which helped lead to my downward spiral and ultimately in that psych place. He really didn't have much to say about that.

He ordered a lot of blood tests and an ultrasound of my liver, I guess to make sure nothing has spread there. He is going to make sure I get into the Oncologist and I am going to have another EUS with FNA biopsy of the tumors. So hopefully something can be figured out and I can have a definitive diagnosis. He seems to think it is going to be functional neuroendocrine tumors or uhh I think it is also called endocrine neoplasia.

So I have a lot of appointments and tests next week including an appointment with a law firm for my disability claim. I hope that goes well to take some of the weight off my wife as far as financial things go.

Hope everyone is having a low pain day!
Posted 11/25/2014 8:39 PM (GMT 0)
Hey Mark...

Sorry I've been "off the grid" literally and figuratively mad I'm so glad to hear that you have actually seen the GI (though still beyond suspicious of that scenario).  Are your tests SCHEDULED next week?  If not, PLEASE make that your priority over EVERYTHING ELSE.  Again, knowledge is power.

I'm sending moral support to you and your family as the holiday approaches.  I pray that y'all find the strength to celebrate the present, not MEDITATE on the what if's?  I know that's hard, but with Grace...anything is possible.

Hugs~~Dixie

Posted 11/25/2014 11:34 PM (GMT 0)
Hi Dixie,

I've already got the blood tests done. They took like 16 vials of blood lol I thought she was going to take it all. The liver ultrasound is on Dec. 5th. My appointment with my pain management doc is Monday. It is my first time seeing her since everything has happened and I'm not really sure what I'm going to reveal. I will probably just update her with med changes and leave it at that. The way I see it is she is treating my physical pain and not my mental pain so it would probably just be a waste of time to explain everything that has happened.

As far as the appointment with an oncologist and for my EUS/biopsy, I am supposed to be receiving a call from scheduling dept. for those places. So I guess I have to just wait for those calls and see when they can get me in. I've been wanting to see an oncologist for so long now and I'm very happy that I am finally going to see one.

Not much else going on...just one day at a time.
Posted 11/26/2014 5:26 PM (GMT 0)
Hi, Mark - just wanted to know how your PM appt went yesterday.

Gentle hugs and healing vibes as always. Hope you're getting some relief.
Posted 11/26/2014 7:51 PM (GMT 0)
The appointment is actually this next Monday so we will see. The Tramadol isn't working at all as a breakthrough med anymore. I think the Fentanyl patch just has my tolerance up too high for the Tramadol to make any difference. I'm going to bring that up but I suspect that she would rather increase the patch to 75mcg than start a stronger quick acting opioid and I really don't want to go up on the patch if I don't have to yet. I want there to be some room to move like if I have surgery or if this drags on really long before I can have the surgery.

I'm doing good with the PM so far except for when I need that BT med and it doesn't work.

I hope everyone has a great, pain-free Thanksgiving!
Posted 11/26/2014 9:56 PM (GMT 0)
Well, the good thing about Tramadol is that there's a lot of room to move up to something like Percocet, which is stronger, but there are a lot of stronger options than percocet so it still should be okay post-op.

I'm sorry it isn't working for you, and good luck with your appt.
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