Two years…

It’s been two years (tomorrow) since I had liver cytoreduction surgery (or debulking, as my surgeon doesn’t like to call it)!  How time flies when one has cancer!  I’m writing this today as I’ll probably forget tomorrow.  It’s one of the things I’ve really noticed since my diagnosis: short-term memory loss.  It is actually a known symptom of Carcinoid cancer.  They don’t, of course, no why.

I still get asked from other NET/Carcinoid patients why I decided to have liver surgery when I knew it wasn’t a “cure”.  It’s a long story.

When I was first diagnosed in June of 2012, the surgeon I first saw told me that there was nothing they could do about my liver.  I had about 30 tumors scattered throughout all lobes.  The biggest was just shy of 4 centimeters.  I thought that was that but in researching carcinoid and all the few treatment options, I read about surgeons that do this type of surgery and they said it’s best to cut as much out as possible.  This can re-set the clock and give me more time!  That’s all any of us stage IV cancer patients want — more time (and quality, of course).  I felt that with this surgery I could be buying an extra ten years!

I was really lucky with my surgery.  I didn’t have any major complications. I didn’t even need any blood during or after.  When I went in, I wasn’t sure if the surgeon was going to remove my entire right lobe, where most of the bigger tumors were or just cut out the individual tumors.  He ended up cutting out about 7, ablating (RFA-radio frequency ablation) some and taking a few “slivers” off of my left lobe.  Surgery only took about 4 1/2 hours.  I was in ICU for one night.  I think my total stay was 5 nights.  The only side-effect I had was gastroparesis, where my guts were asleep and I couldn’t eat anything or I’d throw-up (actually, I was throwing up without eating anything).  They weren’t sure if it was the pain meds or not but we finally determined my guts just weren’t working.  I remember I was pretty sick for two days and then it got better pretty fast once everything woke up!

I had the greatest nurses ever!

This was my second surgery.  My first was on July 2, 2012 and I had a right-hemicolectomy.  That’s where they removed a portion of my small intestines, ilium, part of my colon and appendix. They would have taken my gallbladder but I had that removed years earlier.  I had 10 tumors in my small intestines and my appendix was pretty much all tumor.  11 of 13 lymph nodes were positive for cancer but the pathology report said they thought the number of lymph nodes involved was greater but they only biopsied what they could tell was lymph node tissue.

My three year Cancerversary is quickly approaching.  It’s not really something I celebrate but I’m grateful that I’m still here and that things are remaining stable; I feel good and can do everything post cancer that I did before cancer!

Here’s to another 3 (and more)!

Rest in peace Sara.

I wasn’t expecting it so soon.  The sad news that a fellow zebra has earned her angel wings.  I didn’t know her personally and was late to her story, through her Caring Bridge website but got caught-up in her strength and drive to CURE her cancer!

Her story brings up many questions regarding how aggressive should one be in their treatment and how do you know if you should do A or B (or C, D, E, F)?  I know for Sara, her choice was exactly what she wanted.  She fought for it.  She moved to another city.  She battled her insurance company for approval.  It was her only chance for an actual CURE.

Sara was dx’d with mid-gut carcinoid cancer w/mets to her liver.  Stage IV.  Same as me.  She had surgery, sir spheres and PRRT (in Germany).  She also had her heart valves replaced due to damage caused from the high levels of serotonin produced by her tumors.   She was told if it wasn’t for her liver, she wouldn’t have cancer!  I know that feeling although I’m pretty sure my tumor burden is much less than Sara’s was.

Sara decided to seek out a liver transplant.  In her quest to find the BEST, she found two top notch transplant surgeons.  One told her he won’t do liver transplants on Carcinoid patients anymore.  Why? Because 40% of the time it recurs in the liver.  His option was MVOT or Multi-Visceral Organ Transplant. They take the liver, stomach, pancreas, small intestines and part of the colon from one donor.  It’s was described as somewhat like changing the engine of a car.  There is only one place, I believe, that does them and that is the Miami Transplant Hospital.

I’m not going into too much detail as it’s not my story to tell.  Sara sailed through the transplant.  She was released from the hospital in a few short weeks.  She then developed GVHD (graft-vs.-host disease).  I have heard of that with blood cancers and having a bone marrow or stem-cell transplant. I didn’t know it could happen with organ transplants.  It does make sense.  I thought of rejection but GVHD is different.  It is where the donor organ(s) fight for dominance with the hosts.  It looked like Sara was winning her battle but then things turn for the worse.  She died this morning.

She leave behind a loving husband and two beautiful daughters.  My heart breaks for them.

I’m not sue what I would do if given this option.  Take a chance for a cure?  Or take the chance that my cancer will remain slow-growing (until it isn’t), which could be 5, 10 or 20 years?

I know from reading Sara’s blog that she made the right choice for her.

A Quickie…

Not that kind of quickie!

A quick update on my scan results.  Since I am an impatient patient person, I called the hosptial and asked if I could get a copy of my scan and the report.  They told me it wouldn’t be available until Monday so I canned my cancer clinic and asked them if I could swing by and pick up a copy of the written report.  It’s closer anyway.  I just wasn’t feeling very confident after talking to the twat twit from their office regarding said results.

Doesn’t sound like any of my “lesions” have disappeared!  I still have “multiple, small lesions through all lobes of the liver.” They measured 3 of them (she made it sound like I only had 3 and didn’t give me the correct measurements of the biggest).  My last scan said they were all 1.2 centimeters or smaller.  The biggest now measure 1.4 x 1.6 centimeters, which is not much growth. The other two mentioned are just shy of a centimeter.  Nothing to be worried about with Carcinoid like mine, which is slow growing.  I do feel better since reading the results “with my own eyes.”

I hope everyone has a lovely 3 day weekend (if you are in the States).

F is for….

Frustrating…  I bet you thought I meant something else!

I called my cancer clinic yesterday to see if they had my scan results.  I got a call back a couple of hours later.  The twat, twit that returned my call wasn’t even the nurse!  I think it was one of the front desk girls.  While I appreciated the prompt return call, I was taken aback by her inability to tell me much.  I am frustrated because she said they didn’t compare this scan to my last scan because it was done at a different hospital (did I change insurance?) duh…  OK, why couldn’t they get my scan when they had NO problem comparing my past mammograms from said hospital?  I had my last diagnostic mammo at this same hospital that I had my recent scan.  I had my past mammo’s at the hospital I had my last scan (a year ago).  It makes no sense to me.  Probably not to you now either!

So, getting to the results. it sounds like I’ve actually had “lesions” in my liver disappear!  Great news so why am I not happy?  This twat twit asked me if a millimeter was bigger than a centimeter!  Pre-cancer I wouldn’t have known either. How big are these remaining “lesions?” The only one she commented on was 9 mm, which is pretty small.  Last scan they were 1.2 cm or smaller.  I had around 10 but even my oncologist said we couldn’t be sure what they were.  Hmmm, I’ve had a surgeons hands on/in my liver cutting out what he could, ablating some and leaving the rest so I think we know what they are!  Anyhoo, she did say she would put the report on my oncologists desk as he wasn’t in the office.  OK.  I seriously doubt I will hear from him, which is fine.  I’m good.  I’ll get the report one of these days on MyChart.  She did mention that I have a fibroid.  Argh.  I had one removed a year and a half ago (or so) when I went it for a uterine ablation due to continued/heavy bleeding.  It hadn’t shown up on my scan nor did it show on ultrasound but my GYN said it was about the size of my uterus and most likely causing the bleeding.  After removing the fibroid, she tried to do the ablation but couldn’t because my uterus was done with that!  It said, “nope, no more hands and machines in there.”  It did stop my bleeding so I was ok with that.  The twat twit told me I should follow-up with my GYN.  She said it was near in or on my right ovary.  Can fibroids grow on your ovaries?  I thought they were just in your uterus.  Guess I’ll Dr Google that one.  I’m sad I can’t go back to the OBGYN who did my last procedure due to my job and insurance changing.  She was awesome and I really liked her. I felt more compassion and concern from her than I do from any of my other doctors!  I haven’t found another one.  I’ll just wait and see what the report really says.

A long story for what is basically good news!  I’m still not happy.

Waiting…

It seems us cancer patients spend a lot of time (precious time) waiting.  Waiting for appointments, waiting for tests, waiting (the worst) for test results.  I had a triple phase CT Scan on Monday.  Today is Wednesday.  I’m still waiting…

While this may not seem like a long time, for me it is.  I really, really miss my old insurance.  My results would be posted online.  Sometimes the same day!  I’m just not used to waiting.  I also had this scan after my visit with my Oncologist, not before (as is usual) so I don’t have a “date” as to when I would definitely get the results.  The reason I had it after my appointment?  Well… at my previous appointment with him, he said if my blood work (tumor markers, etc.) stayed good then I wouldn’t need a scan.  At this last appointment, he said, “oh, it’s been a year.  We don’t want to go longer so lets get a scan.”  Um, ok.  Make up your freakin mind!

My new insurance did away with their patient portal for test results, etc., right after I joined.  I was very disappointed.  I don’t know why they did it unless it was cost.  The hospital where I had the scan does have a patient portal that lists your results but when I had my diagnostic mamo, it took about a week before they showed up.  I may call my clinic today and see if they have the results yet.  We (my Onc and I) are not expecting anything much from this scan but the worry remains.  I know it serves no purpose to worry about it.  It is what it is…  but I’m. Still. Worried.

This is my first post on WordPress.  I’m thinking of moving my blog over from blogspot.  I’m not very “techy” so I’m not sure if I can figure out how to do it.  I can’t even figure out how to add a picture here!

A brief history of my cancer diagnosis.  I have gastrointestinal carcinoid cancer that had spread to my liver on diagnosis.  I am stage IV.  I’ve had two surgeries.  Without getting into a lot of detail here, I’ll just say that I had most of the tumors surgically removed and was stable (remaining tumors had not grown) on my last scan (Feb. 3rd, 2014).  I will post an update once I get the results from my latest scan.

Until then…

Remember that everyday you wake up is a good day!