3 years...

I wasn't sure I was going to write anything about my 3 year "Cancerversary."  Yes, I'm happy that I am still here.  I'm not "celebrating" getting a cancer diagnosis although I doubt anyone does.  It is more of a time to pause and reflect on the past 3 years; acknowldge that I am still here and have few issues... 

Part of me can't believe it's been 3 years already!  Where does the time go?  At other times, it seems like I've lived with this ROCK over my head forever. 

Why a Rock? 

We've lost several fellow ZEBRAS recently.  It seems like they are doing well, then have a few issues that quickly accelorate and then they die.  It's like a rock slide.  Everything is smooth sailing hiking and then BAM!  Rock-slide and you are in deep shit doo-doo. 



Here's to 3 more!

A sad day, saying goodbye to a fellow zebra

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.

Scan results--sort of...

I called my cancer clinic Wednesday 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 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. I asked her 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 OBGYN 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! It said, “nope, no more hands or 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 OBGYN. She said it was near in or on my right ovary. Can a fibroid 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 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 yet. 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.

Now it is Friday. I haven't heard from my oncologist and the report it still not in MyChart. I think I will call the hospital today and ask to get a copy of my scan and the report!

An update:  

A quick update on my scan results. Since I am an impatient patient person, I called the hospital 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 either). 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).

Scanxiety...

Google Scanxiety and you will actually get a definition: Anxiety suffered while waiting for the results of an important medical scan.

My definition: Anxiety suffered while waiting to get the scan!

I met with my oncologist yesterday and while everything seems fine, he did say that I should have a scan now rather than wait. I was a little surprised because at our last visit he said I could wait as long as my tumor markers remained "normal." This time he said he wouldn't want me to go longer than a year, which it has been as of Monday.

I am actually relieved to be getting a scan. Even though my markers and other blood work are good, I still want to "see" what is going on, if anything. Better to know that I am still stable than to wonder if I am. I don't trust tumor markers to show everything. However, even with the relief, there is anxiety. You just never know. He also told me I could get it within the next couple of weeks, like no hurry. Then he told the nurse to schedule it "now." NOW? Did he feel something when he palpated my abdomen and just didn't want to say anything? Then I remembered that we discussed getting the scan before he examined me. I'm sure he just told her to go ahead and schedule it now, not meaning urgent but to get it done since I may have had to wait a couple of weeks to get in. Well... that ain't the case. I go in Monday morning at, gulp, 7am! I'm not too thrilled about that but at least I'll be done early and can get to work. This is at a different hospital than I've had my other scans. This is at the hospital where I had my mammogram. Its a nice place and I'm sure it will be fine.

Keep your fingers crossed for good results!

Also, today is World Cancer Day.

Proposed FDA Regulations of 'Lab Developed Tests': Could Cause Harm to Patients

I received this information in another post from a fellow blogger: Cancer....an unexpected journey

Please, click on the link and sign the petition. Change.org

I don't want to plagiarize Luna's post but I want to say that most NET Cancer patients receive very specialized blood tests that are not "standardized" tests and could potentially not be covered by insurance if this proposed regulation goes into effect.  I receive one that it not considered a "standard" blood test that gets sent to a specialized lab in California (ISI) and there are several more that I could get as well (a few I have had once but have not repeated them yet)...

If you are so inclined, please contact your Congressional Representative and your Senators to let them know that these proposed regulatory measures should not be passed.  You can even email them!
To find your Senators:

http://www.senate.gov/general/contact_information/senators_cfm.cfm

Find your Representative:

http://www.house.gov/representatives/find/

Email President Obama/the White House:

http://www.whitehouse.gov/contact/submit-questions-and-comments

This can affect those with all types of cancer and rare diseases for which standardized testing may not be available.

Speaking of blood tests...

I had my 6 month  tests.  Everything is normal.  My CgA is the same but my pancreastatin has gone up.  It's now at the very top of normal.  (0-135 is the range and mine is 135).  That's a small increase but I'm sure nothing to worry about.

I meet with my oncologist tomorrow.  I have to find out if they really are on my employee's health plan now.  If so, I will switch.  It'll save me some money-I think.  Not much but a little.

Patient Advocates

I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.

http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?

I'm not really familiar with this list but I'm going to check it out.  I'm #316!  You can follow me on Twitter through the link on that site.  I'll try and add a "twitter" button on my blog too.  I don't tweet much--I'm hardly online anymore after working hours.  I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it!  Of course with smart phones and iPads it not easy to get away from our online "life".

So what is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.

Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy

I'm not sure I consider myself a "patient advocate".  I started my blog to keep my friends and family informed on my medical issues and treatment.  Of course, I think most personal cancer blogs start out that way.  I do want to share what I learn along the way and help others.  I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.

To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer".  Lends moral support, medical information and shares treatment experiences.

What is a Patient Advocate to you?

 

Fake Cancer Claims

Lately there have been 3 instances of people faking a cancer diagnosis (online support groups) either to get money or attention or both.  One was a local girl who bilked people out of thousands of dollars.  She even had her place of employment fooled.  They held a fund raiser for her and raised $16,000!  She also received money from non-profits but they won't say which.  You can read the story here:  Charges-filed-against-utah-woman-accused

Two other instances were on a "community" website.  I won't say which but it is one I go to occasionally and read up on how people are doing.  Two young women.  Diagnosed with two serious cancers. One was kidney and the other was endometrial and colon cancer.  One girl died.  There were over 100 posts on her blog.  IT WAS ALL FAKE!  The other blog just disappeared, however, I also followed her on Instagram.  Then that one disappeared and I received a "follow" request from her again and when I clicked on the link, it was from another person who said this girl was a total fake!  I found out that it was true.  I don't understand people mental frame of mind that can do this.  Don't they realize it hurts all of us who are REAL?  I know some are just plain criminals and want to milk money out of people however they can.  Sociopaths.  Others may be mentally ill and craving attention.

When I googled "fake cancer blogs" to find the article about the girl here in Utah, I was shocked to see how many reports came up of people faking their cancer diagnosis (or their child's) for financial gain (or in one case, breast implants).  Really?

I don't know how you can tell who is real and who is not.  I guess you just take your chances in the online media and communities.  Be careful who you donate too!  Donate to a charitable organization if you can.

Please know this.  I am real.  Yes, I have hair.  No, I have never had chemo but even if I had, not all chemo causes hair loss.  I have scars.  I have pathology reports.  Even though those can probably be fakes pretty easily.  My scars can't.  Just sayin....