Wednesday, July 24, 2013

Drifting...



I am officially now in the "watch and wait" club.  I feel like I am a piece of driftwood....


The ocean tides have brought you in.
A stranger in a world of sand. Each grain unique among man.
The miles you may have traveled. The wonders you may have seen.
Stuck among the land. To wait, to watch, to wonder...
Will time erase you?
Will time return you to the sea?
Or steal you forever from me?

************************************

Drifting is also: A driving technique where the driver intentionally or unintentionally oversteers, causing loss of traction in the rear wheels or all tires, while maintaining control from entry to exit of a corner. A car is drifting when the rear slip angle is greater than the front slip angle, to such an extent that often the front wheels are pointing in the opposite direction to the turn (e.g. car is turning left, wheels are pointed right or vice versa).
File:Drifting1.JPG


I first saw it in the movie "Fast and Furious 2 or it might have been "3". It looks pretty fun but I would never dare try it!

I wrote the above little "ditty" before my appointment with my Oncologist yesterday. I thought that I would feel more "adrift". That's not really what happened or how I now feel....

My appointment went well, I never know what to expect.  Last April he said that if my scan was good, he probably wouldn't need to see me but every six months. I wasn't sure how I felt about that but obviously, I felt like he was setting me adrift!  I feel better when I am actively seeking treatment.  Looking for a surgeon that would resect my liver tumors took about 6 months.  I was doing something. I was in motion.  Not "waiting".  Now I am waiting.  Waiting for that other shoe to drop.  I am trying not to think that way.  I want to move on.  Move forward...  an object in motion stays in motion.  Motion is a good thing--motion is life!  

We looked at my scan together trying to figure out how many tumors I really have. My scan reports have always said "over 20".  My liver resection took care of the biggest--about 7 tumors.  The new scan just say's "multiple".  There does look to be many but some are so small ( a few millimeters) that he's not sure if they are tumors or something else.  My biggest is now 1.2 centimeters, which is pretty small.  The good news, of course, is that they are not growing! I am considered "stable". Stable is good in Cancer-land. Not as good as "in remission" or "NED" (no evidence of disease) but I know that I will never be NED! 

He mentioned they are starting a clinical trial for one of the new VEG-F(?) class of drugs.  I didn't get the details.  He said they do like to see "progressive" disease and since I am stable, I don't feel like it would be worth it.  Why take the chance on bad, life altering side-effects when I could go years with stable disease?  I asked how long they would be doing it and he said probably a couple of years so it is something I can do down the road if I become "progressive".  I told him I am not opposed to doing a clinical trial though.  I also told him, again, about the PRRT trials starting up around the country.  This is something I probably could have gotten into had I not had surgery.  I even gave him the print-out from clinicaltrials.org website for him to keep.  He said he had a couple of patients who were really interested in doing it.  If you would like to read more about PRRT, a great website is: www.prrtinfo.org.

I did ask him about having MRI's instead of CAT Scans and he explained the difference in the results, time, etc. I think I'm sticking with CAT Scans for now.

My pancreastatin test is not back yet but I am expecting that it will be half again what it was last time. This is my third pancreastatin test (a more sensitive tumor marker test thant he CgA). The first one was over 600, second 300 so if it follows the trend of my CgA, it will be about 150. I think <100 is the normal range. We decided to keep doing my tumor markers every 3 months so I will meet with him again after that, however, that would be October and he is on-call that week so not in the office. (How nice that they don't have to come in when they are on-call.) My next appointment with him will be in November, which is fine with me! My scan should be in January but he said if my "markers" are good then I could push it back if I want. I'll wait and see but for now, I don't mind waiting. All-in-all it was a good appointment and I left feeling very positive.  My shot went well.  I had a "newbie".  I think it was her 1st Sando shot but she had supervision.  It hardly hurt so I told her she did a great job!  I'm a little sore today but just the usual tight feeling in my hip and leg.  

So I am a bit ADRIFT...  adrift in the sea of cancer.  I'm feeling good though.  Now we wait, we watch, we stay vigilant.











Thursday, July 18, 2013

House MD

One of my favorite shows was House.  I'm sad it was cancelled.  I had heard that they had "touched" on Carcinoid Cancer on several episodes.  I found this list on another blog and thought I would share it here.


Season 1 Episode 3 "Occam's Razor" (Chase hypothesizes patient has a carcinoid)
Season 1 Episode 5 "Damned if You Do" (Cameron hypothesizes patient has a carcinoid)
Season 1 Episode 14 "Control" (Wilson does a CT scan to rule out carcinoid)
Season 5 Episode 10 "Let Them Eat Cake" (Kutner hypothesizes patient has a carcinoid)
Season 5 Episode 18 "Here Kitty" - (Final diagnosis - by House of course - is carcinoid tumor of the appendix)

I'm going to be doing some old episode watching soon.  http://www.usanetwork.com/house



3 days before my colonoscopy that found my cancer, I watched another show.  It was about a doctor who was in a coma but his "spirit or soul" walked around the hospital helping other patients get diagnosed and saved.  One of these patients was a young boy about 8 to 10.  He kept having "attacks" that would eventually cause him to pass out and his heart would stop.  It was diagnosed as Carcinoid Tumor.  Of course, they did a quick surgery and declared him "cured".  I cannot remember the name of the show.  It was just so strange that less than a week later, I would be diagnosed with the same thing!  Perhaps it was a "pretense" of things to come.  If i can find the name of the show, I will post it.  

Wednesday, July 17, 2013

CT Scan...

I had my follow-up CT Scan this morning.  The report was online by the time I got to work!  FAST...

My blood work came back as well.  Everything looked OK to me.  CgA is still within normal range but since it was a different lab the "range" is slightly different on all these tests so I can't graph them!  Rats... They'll do the CBC and Liver Function tests again when I go see my oncologist next week.  Maybe I'll make them do the CgA over again as well (that is one of the tumor marker tests).  My pancreastatin is not back yet but I'm pretty sure it will be lower than the last one, which I can't find so I don't know what it was.  Another rats!

So... CT scan results show that my areas of fluid(?) in my liver are mostly gone!  1 area is still there but much smaller.  They did not include measurements this time.  No new tumors in my liver, which is fab!  remaining "nodules" are still multiple and scattered throughout but have remained unchanged since the reference scan (did not say which scan they referenced).

Some interesting new findings although I think mostly unrelated to my cancer are that (this may be TMI for some so stop reading here--my comments are in blue)...

The endometrium appears irregular and mildly
heterogeneous (I Dr. Googled this and heterogeneous just means "mixed" or "different"). There is tiny fluid in the cervical canal (no idea what this could be?) . The left ovary is normal (yeah for normal). There is a lobulated 2.1 cm low density structure in the right adnexal region with marginal
enhancement (probably a cyst -- the Adnexal region is the "ovaries and fallopian tubes" (again per Dr. Google). There is small fluid in the right adnexa and right posterior pelvis (ruptured cysts? I have been having some pain in that area. I thought it was from my surgery but Dr. Google said it was most likely from ruptured cysts).

FINAL IMPRESSION:

1. Stable to slightly smaller multifocal liver metastases (yeah!).
2. Superior wall thickening the proximal transverse colon near
the inferior margin of the liver. This could represent
metastatic involvement (not yeah!) given the proximity to the previously
resected liver lesions. Reactive thickening related to previous
surgery could also be the cause of this finding (most likely but I am wondering if I should go in for that follow-up colonoscopy--will ask my Doc--again).
3. Involuting right ovarian follicle (Dr. Googled that and it means a collapsed follicle, which is what the egg is in but I'm probably not ovulating so it is common for the follicle to collapse).
4. Mild irregular appearance of the endometrium and small fluid in the cervical canal. Consider
pelvic ultrasound for further evaluation (hmmm, probably why I am still bleeding. Not uncommon and is why my OBGYN put me on Progerstone--just hasn't stopped the bleeding but will give it more time).
5. Mild diffuse urinary bladder wall thickening without focal mucosal lesion (????  Have no idea on this one).

I did message my OBGYN and told her I had my CT Scan and to look at the report if she had time.  Haven't heard back from her yet.  If I had done my Dr. Google beforehand, I probably would not have messaged her and just waited until after my appt. with Oncologist next week.  I'm pretty sure she will say that there is nothing to worry about yet and to come see her in another month or so and then maybe do a follow-up ultrasound or something.  You never know though.  They may want to do that ultrasound.  I just dont' want to have a colonoscopy when I am bleeding cause that is just gross!

On a totally different thought... I have 1/2 leased my mare Abbie to a very nice lady! Abbie seems to love her and she rides really well (I havent' seen her ride but my trainer said she is very soft and light in her hands, which is good).  This will help me a little bit financially and now I can get my window in my car replaced as it has cracked all the way down now.  On the drivers side directly between my eyes!  


I will post next week after I meet with my Oncologist.  My guess is that he will want to follow-up with me in 6 months now!  Woot, woot.  Not sure he will have any concerns about the rest of the report.  I think the fluid and all that is probably due to cysts, which are pretty normal and my OBGYN is keeping an eye on the continued bleeding issues which hopefully the progesterone will stop in a few more weeks.  It's been 7 weeks and she said to give it 6-8 weeks to work.  I don't think it's going to work.  May be looking at a D&C or Uterine Ablation but we were hoping to avoid the OR again!  Part of me just say's take it all out but I really, really don't want another surgery!  That would suck but not having periods/bleeding would be a huge bonus!  I would probably want to keep at least one ovary so I don't go into instant menopause.  Oh, the progesteron has helped with my hot flashes. I'm not having many at all now.  They were daily and now it is just occasionally!  One of the GT (good things) to come from taking it.    I am, however, having some pretty bad headaches and I'm very, very tired.  Both side-affects of progesterone.  


Take care and I will post next week after my appt.  

Tuesday, July 9, 2013

Frustration

Oh the frustrations of having a "rare" cancer!  I went in this morning for my scheduled appointment to have my blood drawn for my 3 month checkup.  Two weeks ago I reminded the nurse that they had to order the special Z-tube for one of my tests.  It is very sensitive and I've been advised by many that only one lab does it right (ISI in California).  ISI will send them the tubes free.  They can also get the tubes from Lab Corp.  I've had the test done at the hospital lab before and they knew what it was.

So, I get there and guess what?  No Z-tube.  I waited and waited and the medical assistant finally came out and told me she didn't know where the "special" tube was and she was looking for it.  I told her I had reminded the nurse two weeks ago to get it.  Anyway, long story short.  They called the hospital lab and they did have one.  They sent me down to the outpatient lab where I had to register, wait again, wait some more and finally got the stupid blood work done!  THE big problem is that this means the test won't be sent to ISI.  It will most likely go through Lab Corp to ARUP and then on to Cambridge LABS who apparently don't do it right.  In other words, a HUGE waste of money and time!  ARGH.  I was gone for 2 1/2 hours for a five minute blood draw.

I can't wait to see what goes wrong next week at my CT Scan appointment.  Hopefully nothing since I've been there many times now and I think they know me!  Hahaha.  I tried to be "nice" while I was explaining to the medical assistant and their boss, why the test needed to be sent to ISI.  They just looked at me like I was from another planet.

This happened this morning starting at 8:30 am.  It is now 4:50 pm and I am still mad!  I can't let it go...  I think I'm having a bit of "carcinoid rage".  I even had palpitations and felt like I couldn't breath.  However, I must say I was nice to all the medical staff.  They knew I was frustrated but it really wasn't their fault.  It was the nurses fault and my Doctors fault for not educating his staff!  I'm going to have to talk to him about it when I see him next.

I'm feeling a lot better already.  I just had to vent.  I'll let you know how the test come out.

Monday, July 1, 2013

One year ago...

One year ago today I was "prepping" for my BIG surgery; the first surgery after my diagnosis of metastatic neuroendocrine cancer (Carcinoid).  This was a right-hemicolectomy.  The surgeon was planning on a laporascopic surgery (successful).  They go in and take out part of your small intestines.  I remember feeling a bit nervous, as would be expected.  My biggest fear was that they would have to do a colostomy.  I was told by the gastroenterologist that I wouldn't need one but my surgeon said that you just never know for sure until you get in there.  The prep is not fun.  This time, however, I did not have to use the Movi-prep but just take some ducolax pills and drink a two-week supply of miralax over a few hours.  Much less nasty tasting than the Movi-prep.  It seems like a lifetime ago.  My only regret is that I wish I had the knowledge that I have now.  I would have asked more questions about doing it laporascopically vs. open.  I know now that the "open" allows them to "run the bowel, and look for metastases or second primaries, etc.  It's much harder to do it when the surgery is laporascopic.  To this day, I don't know how much he looked around in there.  I know that if there is anything else (and my chances of local recurrence are high), it will be slow-growing so not really urgent.  In fact, I asked my oncologist if I needed to have a colonoscopy again (recommended by gastro doc) and he said "no".   Anything they find will be so small we wouldn't do anything about it yet.  I'm not sure how I really feel about that attitude.  If it's small, it can be removed during the colonoscopy, right?  Also, I still worry about regular colon cancer since both my parents had it and so did my mom's brother.  I know with all my CT scans, it'll show up if something is big enough.  I think.

The surgery went fine.  They took out about a foot of small intestine, my illeol cecal valve, appendix and biopsied a couple of the liver tumors.  A total of 10 tumors out of my small intestines, my appendix was completely occluded by tumor and 11 or 13 lymph notes were all cancer too.  Sounds terrifying and to read my pathology report it is.  It's about 3 pages long!  I'm so very grateful this is a fairly slow-growing cancer.  It is not always.  Sometimes it is very aggressive.  Sometimes it changes from being slow to fast growing.  Crazy disease.

I am grateful for time.  The time I've had this past year to understand my disease better.  Time to enjoy life.  Feeling pretty good most of the time.  It's all about time, isn't it?  How much time do we have?  What to do with our time?  What time is it?