Back on the Road Again PRRT #3 Bad Berka

These are the guys and the place that I am leaving behind to go for a 3rd round of PRRT in Bad Berka Germany.  It's a hard choice at this point, to be honest.  


I want to share that the 1st PRRT I was so excited to go to get the treatment.  The 2nd trip was OK but after I got home I was so sick.  That 2nd PRRT really kicked my butt.  Now, I am actually dreading going there for PRRT #3 because I know that I will be going again through the pains of a long, hard recovery.




I feel like a shadow of myself.  I feel that the treatments have stripped away at my mind and my "fight" is gone.  I have never felt this low during all the 4 years I have had cancer.  So, why should I go through with this?  It is my only hope at this point, I tell myself.  It is a series of treatments.  Another reason.  I just don't want to go.  But, I am going.


I had the worst headache/migraine of my life this weekend,  Screaming for help at the urgent care.  It took 90 minutes and I vomited over 30 times until I finally got to see the Dr. and got IV meds to help me.  I was scared and never felt so much pain and suffering in my life.  I am scared to travel and hope my primary care Dr will prescribe an injectable migraine med for me before I travel to take with me.


I am so tired and depressed.  I hope and pray that I can endure this trip and treatment, because I really feel all the fight is going out of me. 


Good reader, if you have it in your heart, please pray for me, send healing thoughts, imagine me well....whatever your belief system.  I need help.

Another new symptom this week - heart palpitations

As I prepare for my monthly oncology visit today, I have to prioritize what to discuss.  I have a 2 page summary of my disease that I usually bring to keep my local oncologist up-to-date with my other doctor visits, treatments, symptoms, and my questions of the day.   I have found this above all has helped my doctors visits.


If it would be helpful to anyone, I will probably post this letter minus my personal data.  This is a really important part of any Dr visit.  A big secret, doctors don't like to share, is that they are human too!  Yep, under that white coat they have feelings, get tired, burnt out, preoccupied, and just like everyone there are things and people they don't like.  By the time I see the doctor, who knows what he has already had to deal with today or what is on his plate.  I really try to help him focus on my case, what I need, and try to do it with as little energy as possible.  He is human, too, after all, and has a limited attention span like all of us.


However, today I don't feel like updating my sheet because that makes me have to focus on all that is wrong with me and I'm tryin my best to live like Cleopatra in the land of De-nial.  Can you relate?  I open the file in another window now to help myself get started with this task.


I have a disturbing new symptom to add to my update: heart palpitations.  They started a couple weeks ago.  Just sitting watching TV with hubby, my heart started feel like it was doing flip-flops in my chest.  Kept it up for hours that night and I didn't get much sleep.  In fact, it is doing it right now.   Mental note:  need to check the ACOR carcinoid archives for heart palpitations and check with all my carcinoid buddies from support group.  


Even before I do all of this, I am about 100% sure that this is just another part of my carcinoid cancer and/or carcinoid syndrome.  Maybe my enlarged liver full of tumors is pressing on my heart/circulation and causing this.  Whatever it is, just add another sock to the sock pile.


As I get ready to sign off, I get a blast from the rose bush outside my window.  OK I can't wait to walk out and feel the sun shine on my face.


Peace.
Andrea

My Continuing Carcinoid Journey: Letting Go

Well here is my second post.  I am going to do better at this!  Here we are in May 2010.  I have had 2 PRRT treatments and am going back to Bad Berka, Germany for my 3rd PRRT treatment soon.

What's up?  My carcinoid had been steadily progressing, especially in my liver.  As of  August 2009 I was pretty much out of real options here in the good ol US of A.  So, I quickly had to come to terms with my disease as it was not willing to go on "stop work" until I was ready to deal.  Nope.  The surgeon told me, "Ya need something systemic...surgery won't buy you much, plus the risks, plus the recovery, plus plus plus."  My oncologist, ever the optimist, trying hard to fill his drug trial spots, wants to put me on the Lanreotide trial, "But Doc, I say, I am already on Lanreotide every 28 days."  What's left?  (That I can qualify for and will help me, BTW??)

I had to make fast decisions and I had been following others who were like me. Some had gone ahead with the PRRT.   So, I had to basically tell my doctors, with all respect, and then get their concurrences.

I had my 1st PRRT in Sept 2009 and my 2nd PRRT in January 2010.  With a 11cm liver tumor, several lymph node tumors, one in my spleen, and my friend the meningioma, I found out that I had another tumor in my neck - a lymph node behind my parathyroid.  Ohhhh is that why I always feel a lump in my throat???  Since my neck was never really scanned, you know here in the USA they like to chop us up into every billable scan possible, I had my head scanned, abdomen, pelvis, and the full body Octreoscan.  This little buddy never showed up until I went to Germany and got the Gallium 68 scan.  Would you like me to order an MRI of your neck now??  

Apparently, not all carcinoid tumors are created equal.  The tumors in my spleen and neck do not have somatostatin uptake, IOW, they would not show on a regular Octreoscan.  Also, they don't uptake the PRRT treatment.  Now what do I do with THAT information, I wonder?  But they did show on Germany's state-of-the-art Ga68 scan, thanks to Dr. Professor Richard Baum.  The good ol USA has fallen behind the times.  We don't have quality scans or treatments that are offered throughout Europe as a standard of care.  To quote another carcinoid friend, "It is criminal that PRRT is not in the USA."  End of quote. I ditto that.  Now off my soap box. 

OK.  Two treatments later, I am "stable".  I will take it.  Yep.  I wanna be a "NED" (no evidence of disease...now can you make that into a song, please?) but I'll settle for for "SD" (stable disease).  I have to admit, the 2nd PRRT kicked my butt.  Just like a great fighter, down for the count, I spent two months down for the count and was not sure I was coming back up.  I was sooooooooo tired.  Fatigue just sounds like something military people wear...not a condition that leaves you unable to shower, feed yourself, or get dressed.  Did I say how tired I was?  Oh, and forgetful, too.

Now I am just a shadow of my former self.  I used to be sharp - a Chemical Engineer.  Ready to take on any problem, fix it, do it, debate it.  Now I look blankly at my kids when they ask big questions like, "Mom, can I have my allowance, please?"  

This disease is taking my life, inch by inch.  It's been 4 years since my diagnosis and, gentle reader, whomever you may be, I am holding onto whatever I have left as each day becomes the "new normal".  Yep.  My glass is half full when I can still brush my teeth, care about brushing my teeth, bathe, dress, and OMG go out and drive to watch my son's little league game.  Sorry honey, I can't make it to your weeknight games because Mommy's so sick and just so very tired....promise I'll be there on Saturday.

I am at the delicate cross roads of, "I can't take it anymore" and "The show ain't over yet".  I honestly felt I couldn't take it and didn't want another treatment.  I had a frank talk with God about it.  It went like this, "God, I am really suffering and miserable and I don't want to do this anymore (fight the cancer fight, that is).  So, God if you want me to have this treatment it is all up to you ( I know, it always has been, yes).  I mean, God, you will really need to make this happen because I am not going to try at all anymore.  God, if You want this for me then please make it clear.  

OK.  Would you like to know what happened next?  The very next day my husband's employer called and said that even though the insurance would not pay for this treatment, that the benefits group would be paying for the treatment and the trip.  OK God, I heard you loud and clear.  And, OBTW, the employer will provide a travel agency to make all the arrangements.  WOW God, OK I guess you really want me to have this treatment.  Then, I really don't know who will go with me, I am so weak and we have no one to stay home with the kids while we go out of the country for 2 weeks.  My dear friend and neighbor says she would be happy to come with me.  OK God, I remember the story of Jonah and the Whale.  I get it.  OK.  I am going.

So, I say , "Thanks for everything, for this day and for letting me share."  I leave you with this:

       Like children with their broken toys,

       with tears for us to mend

       I brought my broken dreams to God because He was my friend.

       At last, I snatched them back and said, "How could you be so slow?"

       He said, "My child, what could I do?  You never would let go."

Peace.

Andrea